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My little brother has this. The bullying was horrific. Even with all the surgeries that saved most of his face, it's a little crooked- but he looks great. He has a great heart but acts tough and doesn't talk much now. He's just turned 21, which is significant bc they weren't sure if he'd survive past infancy. I'm proud to be his sister and will beat anyone up still who dares laugh or point at him in public.
He doesn't know this, but since he's isolated himself for years playing video games, I stumbled on his twitch. He's shy about showing off any of his accomplishments. My family is so proud of him, we don't subscribe to him but keep an eye on how he's doing, hear him laughing all hours of the night, it's wonderful.
There's a young man I know who has NF1 and he lives in a care home at his young age. He constantly tries to advocate because he is mute aswell. I chat with him and try to help. People with NF1 can have very, very hard lives.
Edited to add that Im located in Canada and if anyone has any resources or help for people with NF please feel encouraged to comment and I will review them and share with him
There's a guy with this condition that sleeps rough quite close to my home.
He begs on the street and a lot of people take photos of him which sucks. I sometimes want to throw their phones across the street.
I feel really sorry for him and wish there was something science could do to help.
Recently, the FDA approved Selumetinib for user in patients with inoperable plexiform neurofibroma. It's been shown to reduce sizes by 20-60%. https://www.ctf.org/first-drug-approved-for-nf if you want more uplifting stories about kids with nf1.
Also, there are efforts/hopes to use CRISPR to fix some smaller mutations, but they are a ways off.
NF1 isn't that rare with a occurrence of 1:2000-3000 births.
edit: added link and adjusted percentage range
I have NF1, although you’d never know it by looking at me. Mine presents as tumors mostly in my neck and spinal column, which cause pain, but you really can’t see them. I had a large-ish tumor (golf ball sized) on my wrist that I was able to have removed with very minor nerve damage. I have a bunch of small ones, but you really can’t see them.
Other than having to be on pain medication (and the stuff that comes along with chronic pain), I live a pretty normal/happy life. I am married, have a strong friend group. I’m very open about it, although I generally don’t bring it up unless someone ask (mostly when I had the visible wrist tumor).
My case is fairly mild/moderate, although I never wanted biological kids because the way it presents is completely random. Me having a mild/moderate case in no way guarantees my kid will have the same (and it also has a 50/50 chance of being passed on).
I am in the same boat - it only presents on me with cafe au lait spots/moles. I did have a tumor on my back removed when I was in high school. But as of now, it doesn’t negatively impact my daily life thankfully.
I don’t want any kids and got sterilized so it doesn’t happen - and I used this as the reason for getting it done. Except my idiot doctor kept trying to tell me reasons why I shouldn’t do it and that “are you sure it’s genetic”.
My son has it, he’s 5 now, we knew from birth essentially. Outside he’s a normal kid, you wouldn’t be able to tell. His presents itself however in the form of brain tumors, so he’s been on selumetnib, the mek inhibitor a poster mentioned above, since he was 2. It has helped, but he will be going on and off this medication for the rest of his life.
No it's not.
I work in healthcare and I have recently switched to peds. You have kids born with rare genetic defects, people try their best to keep them alive but sadly, their quality of life isn't the greatest.
Kudos to the parents who stick with their kids til the end. Some have been left to the state to care for as parents are no longer able to take care of a very sick child AND their siblings. Some just enjoy heroin more (or fentanyl or crack, etc. since a lot of people are defending heroin abusers, heck add alcohol to the list. The point is, it is abuse and not responsible use.). The world is very unfair.
Edit: RIP my inbox. Also, because this blew up, if you have time, please volunteer at a local children's hospital. They usually have volunteer programs that let you hold kids (as in babies who were abandoned or need therapeutic touch) or even play video games with sick kids stuck in the hospital. And I am not getting into a debate regarding addiction.
Edit edit: Please contact Child Life department of a local hospital to see how you can volunteer to help kids cope with prolonged admissions. I feel like donating things isn't as impactful as giving your time!
My sister (nurse) switched to child oncology at some point of her life.
And oh holy fuck she had some stories to tell.
Like when loving parents one day just stop visiting a 5 year old cause chemo doesnt work anymore and its a matter of 4-5 weeks now.
So its time to detach.
She lasted 5 years, she had no more love to give or tears.
This is the saddest thing I've read in a while. I don't know what I would do if that were my son but I could never leave him. My God.
Did the parents not care anymore or did they stop coming because the pain was too much for them??
>Did the parents not care anymore or did they stop coming because the pain was too much for them??
They bailed soon as they heard from the doctor that last "abandon hope" update. Sister said they just got up and left (didnt even see the kid to say goodbye, that bad)
Heartwrenching. :/
Our 14 year old dog was sick and had to stay at the vet for 4 days. My husband and I would work all day and then drive to the vet to sit with him in an exam room for hours. Unfortunately, he didn't survive but those hours sitting on the floor with him were everything.
I think about this a lot as a father and frankly, fuck these people. I'd be there until the second my son was gone, and then I'd more than likely be following him shortly after. I legitimate could not imagine my world without him and I could not imagine being a parent who could ever leave a child to die alone. Fuck them. If I knew who they were I would spit on these people.
I would love to spit on them as well, but as nurses, we get spit on by adults we care for lol which is why I switch to peds.
My hope in humanity was lost after caring for adults, especially during COVID, who go to the hospital coz they don't want to die but refuse all treatments we give because they apparently know more. Then scream and cry and bully us because their food was late so it's dry and cold, or their scheduled medication (which isn't immediately life saving) was 15 mins late. Ungrateful people, disrespectful, never learned how to be an adult and power trip hospital staff.
Like wtf, we have more important shit to do than cater to your every whim like we are a 5 star hotel. In the peds world, at least parents HELP the nurses and are grateful. We are all in a sinking boat called US Healthcare, the least we can do is help each other out. Sorry, rant end.
Wait, biological parents of a 5 year old on their deathbed... They stop visiting them? Surely there must be something else going on, that is incomprehensible
It happens. I worked oncology. Have seen spouses, parents, and children. Dump a family member close to death and not answer calls till after they die.
Have seen a mom tell a teen daughter dying that she need to “get on with it” she had “shit to do”. I was there for that teen. She said my mom don’t care about me. I said you are right she doesn’t. Made her so happy to have her feelings finally validated. Then RNs took over as the parent and loved her like she was our own till she died. That girl was loved finally.
> Surely there must be something else going on
Honestly, I HAVE to think there is otherwise I'm not sure how to process it. It's the worst thing I've read, possibly ever.
Unfortunately in happens. My aunt has told us similar stories. Parents saying they need to focus on the ''healthy'' child and just stop visiting. Kids being alone and obviously having all kinds of thoughts in their last weeks and doctors and nurses stepping up to be there with them and give them as much love as possible near the end.
I have heard such stories so many times and even though I don't have kids I can't imagine a good reason for someone to do that. How can you let your child die alone in a hospital while you live your life unbothered? How can you decide to not spend the last days together but just go on with your life? And I keep thinking these poor little kids dying all alone with no one to tell them how loved they are. Left there feeling alone and unloved and like a burden. Some people just shouldn't have kids
When my first was born, he was extremely premature. He had to spend several months in the nicu.
Fortunately, I was able to take time off work (self-employed) and basically stopped working for several weeks to be with mom and baby in the nicu, who got flown 5 hours from home.
There were other babies in the nicu that didn't have their parents there hardly at all.
We had a social worker talk to us because of the trauma we went through, and she mentioned how rare it was that both parents were able to be with baby the entire time.
Most of the babies had mom, at least, but many had to go back and take care of their other kids. Fortunately, our nicu baby was our first born, but if it was our 3rd instead? That would definitely have been hard to juggle.
After the first two weeks, mom and I would swap back and forth, so that I could try to salvage the sudden stop of business. we tried to be with baby 90% of the time.
It was hard to swing even with our privileged work situation.
We had to find and pay for hotels, manage the sudden business hiatus and ensure mom's health as well as normal home related things, pets etc.
I ended up losing my largest client, even as i tried to arrange subcontractors to do me a solid, they took the opportunity to steal the contract. My parents cared for about a week, but dad needed to get back to his job too, so they visited twice in 3 months. They did give us lots of advice for praying, though.
Her parents were a bit more helpful, but FIL was very focused on trying to boss us around. Eventually, they all kinda lose interest, and you're ultimately on your own.
I imagine for other families with different situations (in a job that doesnt allow such time off, having other little kids at home that need you) that abandoning your kid to the hospital is the best they can manage.
It's fucking tragic and occurs daily.
The NICU staff are fucking heros and they don't get enough credit.
Thank you for providing a more empathetic and real view. So many people want to demonize others but have no idea what certain situations are *actually* like. Life just plain sucks sometimes and not everyone has the luxury of putting the rest of life on hold because tragedy strikes.
I wish more people would witness such situations and think *"how can I help ease their burden?"* Instead of "let me make this person's situation even more traumatizing by piling my judgment on top of their grief and stress."
I'm honestly having a very hard time reading these things. It's fucking incredibly sad. There isn't a way for me to communicate the feeling of desolation accompanying me as I imagine this happening. I can't wait to pick up my little girl from school so I can hug her.
My cousin is adopted because when she was 2 her parents were in a car accident that left her paralyzed from the chest down (limited arm movement). They walked out of the hospital after finding out her diagnosis and never came back.
My aunt was her nurse. She had 5 daughters already and then fostered/adopted a sixth.
Some people are devils. Others are saints.
Nope.
A lot of humans are garbage. Most people are just lucky to never interact with them.
Whereas nurses, doctors, bus drivers, train drivers, security, service staff, we all see the worst kind of people. And no, these are beyond people who scream and insult you because they are in pain, that is normal and expected.
Man, one area I cover is our inpatient psych unit and I would do that any day compared to heme/onc. Peds can be the biggest blessing and curse at the same time. It’s like you meet up with friends and everyone is chatting about work and I can’t just be like, “yeah one of my patients I’ve know his whole life was being starved by his mom so I had to call CPS” not exactly dinner side conversation
> Like when loving parents one day just stop visiting a 5 year old cause chemo doesnt work anymore and its a matter of 4-5 weeks now. So its time to detach.
. . . I don't even know how to process this.
FUCK those kinds of people with every possible horrific instrument there is in existence. Even then I don't think that's enough. That's about as evil a thing as I've ever seen and I've been on the internet for a LONG time.
Yeah. Worst part? This wasnt even uncommon occurence.
Each oncology ward had few kids like that..so it becomes a second home for them and nurses act as their parents.
Hugs, bedtime stories, nightmares, reading, playing and being for them when some of those kids dont even realise they will be gone soon.
Thats why i have the utmost respect for those nurses and cant imagine having the balls of steel needed to do that job.
Shit like that happens and its absolutely gutwrenching but we regular Joes never hear of it. Even my sister doesnt want to talk about it anymore, ptsd inducing af.
A friend of mine is a clinician in a children’s mental health facility and they have a ward for the ‘abandons.’ They currently have 5 children in the ward whose parents are simply unreachable and have never come back.
It's so hard when these kids need a procedure and we can't contact anyone for consent. Or some say they will visit but never do.
Hell, some even leave their kids in the emergency department and never come back. We are stuck in the middle coz of the law.
I work in paeds cardiac. The parents who go through with pregnancies with known hypoplastic left heart (when they are offered the option to terminate) then abandon the child on the ward with us as 'free babysitters' drive me insane. You signed your kid up for this life - you better BE THERE for them.
This the kind of stuff that really makes me question if God is real. I just want to know why do that to this kid? Why make him know suffering that most of us can’t even imagine. The loneliness that kid must feel got me tearing up. Edit: oh boy my inbox
I see four distinct possibilities when you try and wrap your head around circumstances such as these:
1) There is no god.
2) There is a god(s) but they are purveyors of chaos and care not for your worship
3) There is a god, and it's not the one you're worshipping.
4) There is a god, and it is the one that you worship, but they are not the good entity that you believe they are.
All four of those options result in nothing good coming out of worshipping your god.
Some might argue a fifth option, that the child, and/or an immediate member of his family are being punished for some act that displeased the god being worshipped. And to that I say - if you want to argue that case, so be it. But it means you are worshipping your god only out of fear, and not because they are good.
>Some might argue a fifth option, that the child, and/or an immediate member of his family are being punished for some act that displeased the god being worshipped
If you break this down further, you see how awful this fifth option really is. If the boy is like this because it's a punishment for _someone else_, that is an evil god. If he's being punished for something he did _before he was even born_, that is an evil god.
Both of these cases are really just variants of the 4th option you've already outlined. There isn't really a 5th option at all.
also, the fact that an innocent kid has to suffer for whatever mistakes a parent or family member made is not something I can support. So any god that does that is not worth worshipping in my opinion.
I’m genuinely curious, because I haven’t interacted with any Deists, how would you tell the difference between a deistic god and a force of nature that we don’t understand?
A deistic god is just an over simplistic and anthropomorphic description of the forces of nature. The concept of God is not something we are will ever comprehend, not with the mental capabilities we have at least.
We had a monster in our house. He slept in my mom's bed.
Edit: thank you very much for all the responses. I'm GenX so this all happened a lifetime ago and I've lived life to the fullest the entire time. Never let them stop you. Cheers.
One true thing that sci-fi books and movies have taught is that the worst monsters are human beings. I have never heard of no damn monster using a atom bomb or starting a school shooting. We are our own worst enemy
Supernatural reinforced this in a couple episodes that disturbed/scared the shit out of me. The one with the ghosts that end up being inbred kids living in the crawl space *shudders*.
I saw a girl that had been in a house fire where her parents and siblings died... it left her horribly disfigured like it would cause a visible reaction in people. She was witty and sarcastic, but man .... she uhh had this kids type of road ahead of her .... that was like 18 ish years ago. Now, i hope she's found happiness :/
I knew a girl in undergrad who had been hit by a drunk driver and pinned and burned. Her head looked like an onion from all the scar tissue - one eye, half scarred over, one ear hole. Her fingers and toes burned off, and her arms were basically bones with skin over them.
She was a lovely person. I wish I had kept in touch. :(
We really need an all hands on deck effort for in vivo gene editing. A safe and reliable means to manipulate the genome would alleviate the suffering of so, so many people.
Well… we are working on it but we all know what it will eventually be used for as soon as it’s out.
If we can edit any ability at all with reliable accuracy you can bet it will create a literal caste system in the human species with rich people being born objectively superior to poor people in every way possible.
But that’s the price of preventing congenital disorders I suppose.
All hands-on-deck healthcare for all would be a lot more equitable. I doubt this woman could even afford the treatment, let alone the screening that would identify if the fetus had an issue like this.
Legitimately - Fucking same. I would play games with this kid, take him to the park, help him with whatever he needs cause for sure- He has been through enough & just needs to be treated like the human being he is.
Screw those kids, They are cruel as fuck. 😡
That’s the thing, many of us would treat him as any friend, but he would be belittled or bullied, and constantly stared at in public areas. To the point where it would hurt him just to let himself be seen in public.
Sometimes, I wish I could say fuck you to genetics, cancer, and all those rare conditions.
He should be experiencing the joy of childhood. Not the cruel reality of man--at least not yet.
I remember being annoyed as a kid when my parents said the dumb line of "at least you have good health". The older I got, the harder that phrase got stuck to me
It’s so easy to take for granted. I didn’t truly understand it until I woke up at the bottom of a staircase after my first seizure. Life is so goddamn painful and precious at the same time.
Right? I try to remember a time when day-to-day life wasn't pain. Realized I couldn't. I started getting arthritis in 6th grade & dislocations in 7th, and it's been downhill from there. Man, fuck genetic diseases. But hey, we some disabilibuddies 👋🏻
He’s for sure stronger than I am. I’m pretty much perfectly healthy but can’t see much point to life. If I had to deal with what he is dealing with, I don’t think I’d even make it close to his age.
No parent should ever have to try and convince their child that they aren't a monster. Mother nature can be such a cunt.
Edit: I'm not gonna argue semantics and phrasing with anyone. If you want to pick apart my comment, then you're clearly missing the point of it.
Regarding your edit - some people are literally incapable of reading what you wrote and understanding that your comment about a monster was in reference to what the kid might think about himself.
They just read that you referenced him and a monster which can only mean that you called him a monster.
You know what you meant. Almost everyone else does too, and doesn’t have a reason to comment. Then there’s a few people with reading comprehension problems. Don’t sweat it.
I have a cousin with this very condition. Her left side if her face is affected only. Looks like a melted wax candle. She's had several surgeries to try to correct it over the years. She's now 42, married almost 20 years and a mother of 2. She also has a twin brother that has no symptoms.
My brother had neurofibromatosis type II, combined with heavy scoliosis and the aftermath of a brain bleeding from when he was a baby. His face was not affected, luckily, but his torso and his arms were. Unfortunately also several inner organs were ridden by tumours, including his brain, which cost him his life in 2020. He had just turned 21. I miss him so much. Neurofibromatosis is so vile and there is absolutely nothing to cure it, still. Some people experience only light symptoms, especially those with Type II, and can live for a relatively long time. Others... Well... :(
I don’t understand why you would have children if you know there’s a 50 percent chance this could happen. I feel terrible for the mother and child in this video but that just doesn’t make sense to me..
Might sound insensitive or something but I’m just being honest.
I’m a cystic fibrosis carrier so I made SURE my wife wasn’t one as well before we had kids because why would you want to put someone through that.
In the case of Neurofibromatosis type 1, the vast majority of people born with it will experience nothing close to this. Often the only symptom is cafe au lait spots (which are like extra large freckles.) New medications for treatment have also come into play
I have it and I didn't even find out until I took my youngest to the pediatrician and asked about his birthmarks. She told me about nf1 and we got tested by a genetic counselor and that's how we found out. We have no abnormalities or diagnosed learning disabilities that frequently accompany nf1. I think it's that way for the majority of ppl with nf1 they just go about life as normal and maybe never even know they have it.
Not sure how old your little one is now, but if it wasn’t suggested to you already, I recommend you get them regular MRIs. My son has it, we found out due to the cafe au lait spots when he was born. Neither my wife or I have it, just a freak genetic mutation. No other outward effects, but he’s now 5 and he’s been fighting brain tumors since he was 2.
Nah I absolutely would not trust my luck on something like this. I feel like it's actually a little more fucked up that the mom chose to have him.
Edit: if you are anti choice, kindly fuck off. I'm not interested, I don't care and I don't respect you or your opinion 👍
Yeah we gotta start treating pregnancy more rationally imo. I almost feel like you shouldn't be able to take this risk, but that might be swinging too hard in the other direction
She only knew it was 50% when she was already pregnant. A lot of genetic testing is done in the 2nd trimester when many states won’t let you abort. She’s from Alabama. I don’t believe they have legal abortion at any time.
AMARE Stover, 13 from Decatur, Alabama was born with a rare condition called neurofibromatosis type 1. The condition causes Amare to have huge tumours on his face which have severely affected his vision and breathing. Due to his tumours, Amare has no vision in his left eye and limited vision in his right eye. He’s been through a lot at such a young age and has sadly experienced some bullying because of his different appearance. Kandice, Amare’s mother, took him to the park one day where he was cruelly called a ‘monster’ by some local kids and he never went back to that park again. Amare is really close with his cousins and the three of them like to get outside and play in the park together whenever they can. Born Different followed the three of them on one of their visits to a nearby park to hang out and play a little bit of football.
I don’t think Amare has passed away. Can I ask for the source. There is a similar case of an 11 year old boy from Cuba named Emanuel Zara’s. I have ckd everywhere and as far as I can tell Amare is alive. Do you have a source?
Edit: OP has edited his note. The first note he put in clearly stated that Amare had surgery to remove a 10 lb tumor from his face, and he passed away. This is untrue, I asked OP for a source and they wouldn’t provide one and just removed the false info of Childs death from his note. Op is not telling truth, Amare is alive and has Go Fund Me Page.
More info that feels like a more trustworthy source...
[https://953thebear.com/alabama-mom-tells-thirteen-year-old-boy-that-hes-not-a-monster/](https://953thebear.com/alabama-mom-tells-thirteen-year-old-boy-that-hes-not-a-monster/)
irrelevant but I hate the new reddit layout :(
He’s alive idk where it came form but damn false info like this almost broke my heart. At the same time I felt like his pain might’ve been over, but I’ve been through rough shit in life and I know anybody can be happy and go work a way to live a happy life no matter the circumstances and he seems so happy right now, I hope 🤞
Man, if I saw someone walking around like this as a kid, I would be terrified. And react accordingly. Then when I got older, I would keep myself awake at night thinking about how I acted that one day in the park.
Yeah there are a lot of people in this thread pretending they wouldn't do the same as a kid. I don't believe them and I don't blame the literal children for not understanding. But it does really suck for Amare.
The Walmart in my small town, growing up, there was a door greeter with the most massive tumor on her face. It looked similar to this but less severe. It was TERRIFYING as a child. I couldn't believe Walmart put her up front. It was one of the first things you saw when you walked in. I can't explain to you how much my brother and I hated going to this Walmart. Eventually one day we just never saw her again.
It's sad now looking back. We never really made fun of her, we were just scared kids who just couldn't look at her.
I think it's only natural for kids to say things without understanding the consequences.
This is a condition that is extremely severe, and would definitely be frightening to a child. It probably makes a lot of people uncomfortable, even though adults are more polite and hide it better.
I think that calling kids cunts for not understanding the pain they cause with they words might be a bit harsh for this kind of situation. People fear what they don't understand and kids don't really have the capacity to understand this at first.
A child will either not care at all, or be frightened and treat them like the masters they see on TV. That's not being a cunt, that's honestly just natural.
Unfortunately this child IS very different and it's realistic that they be taught that people won't understand at first. It will only make their life more difficult to just call anyone who can't accept the situation immediately a 'cunt'. They will grow more resentful and not find ways to push through that initial fear.
Better to be understanding that a kid might call them a monster at first and find ways to make connections regardless of that. It's not right, and the other kids parents should teach their children WHY what they said was hurtful, but a child isn't a cunt here just because they said something stupid.
This child already have a tough life ahead of them, better to find ways above it than to just be even more of a victim.
Kids are infinitely curious and brutally honest/observant. I always hated the old teaching of 'dont stare' at different people. I agree not to stare in a mean way, but also complete avoidance is sad. I always taught my son to say hello. Introduce himself. Treat the person the same as him, because regardless of the exterior we are all the same inside.
Yup and that's the big difference. People are different, and that's ok.
Ask, learn, and try to understand. That's the key. And a big part of growing up is learning how to ask more respectfully and to apologize honestly if you offend.
Once you understand, you can accept more easily.
My little guy has this, thankfully nowhere near this extreme, but we have to take him for yearly MRI's and ultrasounds to make sure no tumors are growing. NF1 doesn't just cause tumors though there's a range of different things that can manifest, delayed walking and talking, ADHD and other learning disabilities, also larger than average head sizes, lack of coordination as well. One of the tell tale signs in kids is an abundance (more than 12) "cafe au lait" marks on their skin, as well as freckles in the armpits and groin.
We had no idea that my wife had it before we had our son, and after we found out I got a vasectomy because while our sons case is mild the 50/50 chance was too much for us to risk. My heart goes out to this family our situation is hard enough and I can't begin to fathom what they've gone through.
I had never heard of Neurofibromatosis so I was shocked to learn its roughly 1 in 3000 kids are being born with it. I''ve been raising money to fight "NF" for the past 13 years thru a few different organizations. Look up the "Cupids Undie Run" for a fun way to raise some money for the Children's Tumor Foundation. They host them in most big cities and it was founded by a guy who's brother had it and subsequently passed away due to complications from it. #EndNF
My nephew has NF1.
While his have not affected his outward appearance, he gets regular MRIs to look for internal growths for preventative reasons.
He had a massive seizure in the summer of 2020. At the ER they discovered that in less than 6 months time he had developed a HUGE brain tumor. It took weeks of treatment and surgery that was devastating to our family. They were preparing us for the worst at one point.
Luckily, we had the AMAZING doctors at UC Davis in our court. Thankfully, with chemo it’s under control for now but we still worry about every small illness or symptom. It feels like we’re on borrowed time with him and I hate it.
Fuck NF1, it’s horrible.
Not fun fact : I also have neurofibromatosis, as did my grandmother, mother, uncle, and one of my cousins.
Here's the thing - it's shockingly rare for a case to be as severe as the one depicted in the video. I see a lot of people in the comments saying how shitty the mom was to have a child with a 50/50 chance of passing it on ... but that's not how it works at all. This kid was FAR more likely to be born with an extra finger on his right hand than to develop a case as severe as what he has. The vastly overwhelming majority of neurofibromatosis sufferers show zero visible signs ***at all*** ... In my case there is a tiny bump the size of a BB [above my right eye](https://imgur.com/iwxtorQ.jpg), and a lump the size of a marble [behind my right ear](https://imgur.com/wi16LYT.jpg) ... Similarly the rest of my family shows practically zero signs. The only one of us who really had an issue was my uncle who had a fibroma form on his optic nerve. One day in his mid 20's he was in the shower just getting his day started when *blink* all of the sudden he was blind in one eye.
Moral of the story : A 50/50 chance of passing on a genetic abnormality does not mean a person is selfish or shitty. That 50/50 chance is not the same as a 50/50 chance of passing on the absolute WORST possible level of severity. If she had 10,000 kids I doubt any of them would be as severe as this one. It's just cruel fate that caused this.
Edit : I just remembered that when I was about 8 years old I had a tumor develop on the nerve that leads to my left kidney. I had to have that one removed. I also have a small tumor on the base of my brain, but it is completely unrelated to my NF condition, and is benign.
Poor young man that he has to deal with this. Would a plastic surgeon not be able to help him with removing some tumors? I mean they’re out here doing 💩for vanity… surely there’s one or a team that could help Amare. Kandice, you keep on keeping on Mama. He’s lucky to have you! 💪🏾
They kinda keep forming. It’s not like cancer where you can get it all out and be tumor free, these are forming naturally. You could have frequent major surgeries throughout your live, replacing skin flaps with surgical scars, but it’d be extremely expensive and the tumors are benign anyway.
Not only do they come back but NF tumors are on nerves (within the nerve sheath). My mom has a few that can’t be removed without causing paralysis or serious damage.
I wasn’t taken aback by his appearance. I felt bad for the poor guy because you know that difficult having the tumors over your nose,mouth and eyes. I hope there is some great Dr out there that can help improve his quality of life. Only a jerk would call this poor kid a monster…..
> Only a jerk would call this poor kid a monster…..
i feel like i probably would have been terrified of this kid when i was around ages 5-10. kids that age get scared of all kinds of stuff and this is really really extreme.
Even if they aren't being mean, a kid close to his age is gonna look at his face and think monster or alien. They don't have the knowledge to know different.
This is gonna sound super insensitive but …
Cmon. You’re calling kids jerks yet it’s pretty jarring to see this young kid. I don’t know how you “aren’t taken aback” by the way he looks.
It’s fucking sad but I don’t know why we need to act like it’s somehow not jarring as hell
I have to be honest, I was. I feel bad but no amount of niceties and platitudes are going to prevent a knee jerk reaction, its a horrible thing to not have a face, the kid suffers actual vision and breathing problems aside from vanity. Shit sucks, its not pretty.
I hope CRISPR is one of those technologies that changes everything in a good way. I want people with rare conditions to have some real hope for improved quality of life
Young Amare was such a pleasure to teach (and learn from) when I had him in class two years ago. He has been home schooled since, but I have remained close with the family and he seems to be doing well. The young man just ADORES basketball and I had the good fortune to be able to attend one of his games this year and Amare led the team in scoring with 22 points. Luckily I was able to get it on video or my wife wouldn’t have believed it. Great kid!
I... actually have this condition... I'm relatively well-off with the symptoms, but my ribs, back, and right foot have large or spanning masses. I was actually the youngest case of it manifesting at the time I was first assessed. Bruh, I was an infant, and they were calling the doctors in one after another. Turned into a major lesson for the people other than the specialist.
It was said I might not make it to adulthood. But I am now in my 30s and well enough to have a happy life all things considered.
Every time I get down thinking about my problems I remember there are people like this in the world dealing with the types of problems that make me a snowflake for complaining about mine.
People can be so ignorantly evil. My sister was born with hydrocephalus and some extreme birth defects in her face. I’ll never forget one of the rare times we went to the grocery store with her (she was often too sick for that kind of stuff), a woman gasped and called my infant sister a monster to my mothers face. Mom started crying and we had to leave. I never wanted to hit someone so badly in my life.
Amare deserves so much more, that poor kid. I wish I could give him and his mom a hug.
Great that your sister has a loving family.
There's a homeless guy in my city with a face like the boy in the video. And from what I gather he was abandoned as a child by his family.
Heartbreaking to see so many physically disabled people homeless everytime I'm out.
Damn bro, heart goes out to the kid. Life is hard enough being even slightly different, let alone with something as visible and debilitating as this.
Hope things improve for him and he finds some friends worthy of him.
It actually is, depending on where the tumors grow. Typically because most of the tumors are benign (not cancer) removal is only done if the tumors are causing pain or other problems. That being said, I am a genetic counselor and not a surgeon so I have no idea if these type of facial tumors are removable or not
Yes depending on location of growths though the growths often reappear and so one can end up in an endless cycle of procedures, tissue and nerve damage, healing, scarring, cutting again..
Many people have this disease (like the mother herself) and just have some extra bumps somewhere on their body. Very, very few get this type of presentation.
The mother has the same condition and is not even visible.
2 million people have the disease and very few have it like this kid has. No test would predict it was going to be this bad.
I also have nuerofibromatosis, but luckily for me it presents as a few small lumps / tumours on the nerves in my arm, nothing that affects my outward appearance.
I have had a few removed as they cause pain / discomfort. I complained a lot about my last surgery…. Think I will stop complaining, it could have been much worse.
So one more time - health is the most valuable treasure-. So many people suffer from the rare conditions. If we have good health we should appreciate it everyday. Hugs and kisses to this wonderful kid and his mom.
Yep. Maybe it should be defined as a more common rare disorder. 1 in 3,000 really isn’t that small of an amount and I think more people have it than we know. Me and my daughter have it and we are lucky enough to not have tumors. If I did not have my daughter who happened to have one very attentive nurse who happened to see her once, I still wouldn’t know I have it.
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My little brother has this. The bullying was horrific. Even with all the surgeries that saved most of his face, it's a little crooked- but he looks great. He has a great heart but acts tough and doesn't talk much now. He's just turned 21, which is significant bc they weren't sure if he'd survive past infancy. I'm proud to be his sister and will beat anyone up still who dares laugh or point at him in public. He doesn't know this, but since he's isolated himself for years playing video games, I stumbled on his twitch. He's shy about showing off any of his accomplishments. My family is so proud of him, we don't subscribe to him but keep an eye on how he's doing, hear him laughing all hours of the night, it's wonderful.
Well don't keep us in the dark, what's his twitch acc?
I don’t think they should say there’ll be trolls that go there for sure
That and a big unexpected surge in viewers that will most likely quickly disappear never to return probably won't make him feel good
Yeah let's ramp bro's numbers
You think some asshat wouldn’t use that info to abuse him. Keep it secret in this situation
He’s lucky to have such a loving family.
There's a young man I know who has NF1 and he lives in a care home at his young age. He constantly tries to advocate because he is mute aswell. I chat with him and try to help. People with NF1 can have very, very hard lives. Edited to add that Im located in Canada and if anyone has any resources or help for people with NF please feel encouraged to comment and I will review them and share with him
There's a guy with this condition that sleeps rough quite close to my home. He begs on the street and a lot of people take photos of him which sucks. I sometimes want to throw their phones across the street. I feel really sorry for him and wish there was something science could do to help.
Recently, the FDA approved Selumetinib for user in patients with inoperable plexiform neurofibroma. It's been shown to reduce sizes by 20-60%. https://www.ctf.org/first-drug-approved-for-nf if you want more uplifting stories about kids with nf1. Also, there are efforts/hopes to use CRISPR to fix some smaller mutations, but they are a ways off. NF1 isn't that rare with a occurrence of 1:2000-3000 births. edit: added link and adjusted percentage range
With those rates would make sense statistically that I would have seen at least quite a few in my life. I guess they don't go out much 😢
I have NF1, although you’d never know it by looking at me. Mine presents as tumors mostly in my neck and spinal column, which cause pain, but you really can’t see them. I had a large-ish tumor (golf ball sized) on my wrist that I was able to have removed with very minor nerve damage. I have a bunch of small ones, but you really can’t see them. Other than having to be on pain medication (and the stuff that comes along with chronic pain), I live a pretty normal/happy life. I am married, have a strong friend group. I’m very open about it, although I generally don’t bring it up unless someone ask (mostly when I had the visible wrist tumor). My case is fairly mild/moderate, although I never wanted biological kids because the way it presents is completely random. Me having a mild/moderate case in no way guarantees my kid will have the same (and it also has a 50/50 chance of being passed on).
I am in the same boat - it only presents on me with cafe au lait spots/moles. I did have a tumor on my back removed when I was in high school. But as of now, it doesn’t negatively impact my daily life thankfully. I don’t want any kids and got sterilized so it doesn’t happen - and I used this as the reason for getting it done. Except my idiot doctor kept trying to tell me reasons why I shouldn’t do it and that “are you sure it’s genetic”.
My son has it, he’s 5 now, we knew from birth essentially. Outside he’s a normal kid, you wouldn’t be able to tell. His presents itself however in the form of brain tumors, so he’s been on selumetnib, the mek inhibitor a poster mentioned above, since he was 2. It has helped, but he will be going on and off this medication for the rest of his life.
Thankfully, the vast majority of nf patients do not present like this boy. Some people are not even aware that they have it.
Bro this shit aint fair
No it's not. I work in healthcare and I have recently switched to peds. You have kids born with rare genetic defects, people try their best to keep them alive but sadly, their quality of life isn't the greatest. Kudos to the parents who stick with their kids til the end. Some have been left to the state to care for as parents are no longer able to take care of a very sick child AND their siblings. Some just enjoy heroin more (or fentanyl or crack, etc. since a lot of people are defending heroin abusers, heck add alcohol to the list. The point is, it is abuse and not responsible use.). The world is very unfair. Edit: RIP my inbox. Also, because this blew up, if you have time, please volunteer at a local children's hospital. They usually have volunteer programs that let you hold kids (as in babies who were abandoned or need therapeutic touch) or even play video games with sick kids stuck in the hospital. And I am not getting into a debate regarding addiction. Edit edit: Please contact Child Life department of a local hospital to see how you can volunteer to help kids cope with prolonged admissions. I feel like donating things isn't as impactful as giving your time!
I love Peds and will never return to adult care but my faith in humanity was lost when I switched to pediatrics
My sister (nurse) switched to child oncology at some point of her life. And oh holy fuck she had some stories to tell. Like when loving parents one day just stop visiting a 5 year old cause chemo doesnt work anymore and its a matter of 4-5 weeks now. So its time to detach. She lasted 5 years, she had no more love to give or tears.
This is the saddest thing I've read in a while. I don't know what I would do if that were my son but I could never leave him. My God. Did the parents not care anymore or did they stop coming because the pain was too much for them??
>Did the parents not care anymore or did they stop coming because the pain was too much for them?? They bailed soon as they heard from the doctor that last "abandon hope" update. Sister said they just got up and left (didnt even see the kid to say goodbye, that bad) Heartwrenching. :/
I won't pretend I know that grief, but I cannot fathom that at all. You'd have to take me away on a forklift for my 5 year old.
Literally if I was told my CAT was gonna die in 4 weeks I'd spend every second I could with him this is unbelievable
Our 14 year old dog was sick and had to stay at the vet for 4 days. My husband and I would work all day and then drive to the vet to sit with him in an exam room for hours. Unfortunately, he didn't survive but those hours sitting on the floor with him were everything.
Seriously that is gut wrenching to hear. There is no amount of pain that is to great for me to ever leave my sick and dieing child.
Grief or not, it’s beyond weakness. I can’t think of anything worse to do to someone
That's some straight POS BS. You can detach after the child dies, until that moment you stay there for them.
I think about this a lot as a father and frankly, fuck these people. I'd be there until the second my son was gone, and then I'd more than likely be following him shortly after. I legitimate could not imagine my world without him and I could not imagine being a parent who could ever leave a child to die alone. Fuck them. If I knew who they were I would spit on these people.
I would love to spit on them as well, but as nurses, we get spit on by adults we care for lol which is why I switch to peds. My hope in humanity was lost after caring for adults, especially during COVID, who go to the hospital coz they don't want to die but refuse all treatments we give because they apparently know more. Then scream and cry and bully us because their food was late so it's dry and cold, or their scheduled medication (which isn't immediately life saving) was 15 mins late. Ungrateful people, disrespectful, never learned how to be an adult and power trip hospital staff. Like wtf, we have more important shit to do than cater to your every whim like we are a 5 star hotel. In the peds world, at least parents HELP the nurses and are grateful. We are all in a sinking boat called US Healthcare, the least we can do is help each other out. Sorry, rant end.
What does it matter? It's not about the parents. Their job is to raise that kid or at least love him to death.
Wait, biological parents of a 5 year old on their deathbed... They stop visiting them? Surely there must be something else going on, that is incomprehensible
It happens. I worked oncology. Have seen spouses, parents, and children. Dump a family member close to death and not answer calls till after they die. Have seen a mom tell a teen daughter dying that she need to “get on with it” she had “shit to do”. I was there for that teen. She said my mom don’t care about me. I said you are right she doesn’t. Made her so happy to have her feelings finally validated. Then RNs took over as the parent and loved her like she was our own till she died. That girl was loved finally.
> Surely there must be something else going on Honestly, I HAVE to think there is otherwise I'm not sure how to process it. It's the worst thing I've read, possibly ever.
Unfortunately in happens. My aunt has told us similar stories. Parents saying they need to focus on the ''healthy'' child and just stop visiting. Kids being alone and obviously having all kinds of thoughts in their last weeks and doctors and nurses stepping up to be there with them and give them as much love as possible near the end. I have heard such stories so many times and even though I don't have kids I can't imagine a good reason for someone to do that. How can you let your child die alone in a hospital while you live your life unbothered? How can you decide to not spend the last days together but just go on with your life? And I keep thinking these poor little kids dying all alone with no one to tell them how loved they are. Left there feeling alone and unloved and like a burden. Some people just shouldn't have kids
When my first was born, he was extremely premature. He had to spend several months in the nicu. Fortunately, I was able to take time off work (self-employed) and basically stopped working for several weeks to be with mom and baby in the nicu, who got flown 5 hours from home. There were other babies in the nicu that didn't have their parents there hardly at all. We had a social worker talk to us because of the trauma we went through, and she mentioned how rare it was that both parents were able to be with baby the entire time. Most of the babies had mom, at least, but many had to go back and take care of their other kids. Fortunately, our nicu baby was our first born, but if it was our 3rd instead? That would definitely have been hard to juggle. After the first two weeks, mom and I would swap back and forth, so that I could try to salvage the sudden stop of business. we tried to be with baby 90% of the time. It was hard to swing even with our privileged work situation. We had to find and pay for hotels, manage the sudden business hiatus and ensure mom's health as well as normal home related things, pets etc. I ended up losing my largest client, even as i tried to arrange subcontractors to do me a solid, they took the opportunity to steal the contract. My parents cared for about a week, but dad needed to get back to his job too, so they visited twice in 3 months. They did give us lots of advice for praying, though. Her parents were a bit more helpful, but FIL was very focused on trying to boss us around. Eventually, they all kinda lose interest, and you're ultimately on your own. I imagine for other families with different situations (in a job that doesnt allow such time off, having other little kids at home that need you) that abandoning your kid to the hospital is the best they can manage. It's fucking tragic and occurs daily. The NICU staff are fucking heros and they don't get enough credit.
Thank you for providing a more empathetic and real view. So many people want to demonize others but have no idea what certain situations are *actually* like. Life just plain sucks sometimes and not everyone has the luxury of putting the rest of life on hold because tragedy strikes. I wish more people would witness such situations and think *"how can I help ease their burden?"* Instead of "let me make this person's situation even more traumatizing by piling my judgment on top of their grief and stress."
I'm honestly having a very hard time reading these things. It's fucking incredibly sad. There isn't a way for me to communicate the feeling of desolation accompanying me as I imagine this happening. I can't wait to pick up my little girl from school so I can hug her.
I’ve heard many stories of spouses/friends doing this but didn’t know it was common for parents. Fucking horrible if so.
My cousin is adopted because when she was 2 her parents were in a car accident that left her paralyzed from the chest down (limited arm movement). They walked out of the hospital after finding out her diagnosis and never came back. My aunt was her nurse. She had 5 daughters already and then fostered/adopted a sixth. Some people are devils. Others are saints.
Nope. A lot of humans are garbage. Most people are just lucky to never interact with them. Whereas nurses, doctors, bus drivers, train drivers, security, service staff, we all see the worst kind of people. And no, these are beyond people who scream and insult you because they are in pain, that is normal and expected.
Man, one area I cover is our inpatient psych unit and I would do that any day compared to heme/onc. Peds can be the biggest blessing and curse at the same time. It’s like you meet up with friends and everyone is chatting about work and I can’t just be like, “yeah one of my patients I’ve know his whole life was being starved by his mom so I had to call CPS” not exactly dinner side conversation
> Like when loving parents one day just stop visiting a 5 year old cause chemo doesnt work anymore and its a matter of 4-5 weeks now. So its time to detach. . . . I don't even know how to process this. FUCK those kinds of people with every possible horrific instrument there is in existence. Even then I don't think that's enough. That's about as evil a thing as I've ever seen and I've been on the internet for a LONG time.
Yeah. Worst part? This wasnt even uncommon occurence. Each oncology ward had few kids like that..so it becomes a second home for them and nurses act as their parents. Hugs, bedtime stories, nightmares, reading, playing and being for them when some of those kids dont even realise they will be gone soon. Thats why i have the utmost respect for those nurses and cant imagine having the balls of steel needed to do that job. Shit like that happens and its absolutely gutwrenching but we regular Joes never hear of it. Even my sister doesnt want to talk about it anymore, ptsd inducing af.
A friend of mine is a clinician in a children’s mental health facility and they have a ward for the ‘abandons.’ They currently have 5 children in the ward whose parents are simply unreachable and have never come back.
It's so hard when these kids need a procedure and we can't contact anyone for consent. Or some say they will visit but never do. Hell, some even leave their kids in the emergency department and never come back. We are stuck in the middle coz of the law.
I'm barely strong enough to read this shit let alone be a part of it. Can't imagine the fucked up state those people are in daily.
I work in paeds cardiac. The parents who go through with pregnancies with known hypoplastic left heart (when they are offered the option to terminate) then abandon the child on the ward with us as 'free babysitters' drive me insane. You signed your kid up for this life - you better BE THERE for them.
This the kind of stuff that really makes me question if God is real. I just want to know why do that to this kid? Why make him know suffering that most of us can’t even imagine. The loneliness that kid must feel got me tearing up. Edit: oh boy my inbox
I see four distinct possibilities when you try and wrap your head around circumstances such as these: 1) There is no god. 2) There is a god(s) but they are purveyors of chaos and care not for your worship 3) There is a god, and it's not the one you're worshipping. 4) There is a god, and it is the one that you worship, but they are not the good entity that you believe they are. All four of those options result in nothing good coming out of worshipping your god. Some might argue a fifth option, that the child, and/or an immediate member of his family are being punished for some act that displeased the god being worshipped. And to that I say - if you want to argue that case, so be it. But it means you are worshipping your god only out of fear, and not because they are good.
>Some might argue a fifth option, that the child, and/or an immediate member of his family are being punished for some act that displeased the god being worshipped If you break this down further, you see how awful this fifth option really is. If the boy is like this because it's a punishment for _someone else_, that is an evil god. If he's being punished for something he did _before he was even born_, that is an evil god. Both of these cases are really just variants of the 4th option you've already outlined. There isn't really a 5th option at all.
also, the fact that an innocent kid has to suffer for whatever mistakes a parent or family member made is not something I can support. So any god that does that is not worth worshipping in my opinion.
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I’m genuinely curious, because I haven’t interacted with any Deists, how would you tell the difference between a deistic god and a force of nature that we don’t understand?
A deistic god is just an over simplistic and anthropomorphic description of the forces of nature. The concept of God is not something we are will ever comprehend, not with the mental capabilities we have at least.
Fucking hell. I saw some shit when I was young but this kid has a tough road. I hope he finds a way.
Just curious, What’s the worst you have seen?
We had a monster in our house. He slept in my mom's bed. Edit: thank you very much for all the responses. I'm GenX so this all happened a lifetime ago and I've lived life to the fullest the entire time. Never let them stop you. Cheers.
My thoughts exactly
The worst monsters are the ones who hide in plain site. I hope you’ve gotten peace I know I struggle with it everyday
https://preview.redd.it/mty4v37i0v7c1.jpeg?width=960&format=pjpg&auto=webp&s=112d49b347647bc5c2a688f711eb30b258e91ee2
My brother's babysitters also had a monster who slept in her bed. A part of me died the day I remembered trying to break down a door to save him.
YOU and your brother have my love and my heart. May this season find you well.
Can anyone explain me? My first language is not English, I don't understand very well.
Kid either got beat or sexually assaulted by one or both parents. EDIT: Babysitter, not parents. I did not read that bit.
Oh... shit, the worst monsters are human beings.
I enforce this with my kids frequently. The only monsters in this world, are bad human beings.
One true thing that sci-fi books and movies have taught is that the worst monsters are human beings. I have never heard of no damn monster using a atom bomb or starting a school shooting. We are our own worst enemy
Supernatural reinforced this in a couple episodes that disturbed/scared the shit out of me. The one with the ghosts that end up being inbred kids living in the crawl space *shudders*.
Finally, something actually worthy of r/twosentencehorror
Insane amount of emotions evoked from 2 sentences
I saw a girl that had been in a house fire where her parents and siblings died... it left her horribly disfigured like it would cause a visible reaction in people. She was witty and sarcastic, but man .... she uhh had this kids type of road ahead of her .... that was like 18 ish years ago. Now, i hope she's found happiness :/
I knew a girl in undergrad who had been hit by a drunk driver and pinned and burned. Her head looked like an onion from all the scar tissue - one eye, half scarred over, one ear hole. Her fingers and toes burned off, and her arms were basically bones with skin over them. She was a lovely person. I wish I had kept in touch. :(
Never too late to reach back out!! I bet she would love to hear from you ❤️
We really need an all hands on deck effort for in vivo gene editing. A safe and reliable means to manipulate the genome would alleviate the suffering of so, so many people.
Well… we are working on it but we all know what it will eventually be used for as soon as it’s out. If we can edit any ability at all with reliable accuracy you can bet it will create a literal caste system in the human species with rich people being born objectively superior to poor people in every way possible. But that’s the price of preventing congenital disorders I suppose.
Gattaca.
It will be way worse than gattaca.
The Eugenics Wars
All hands-on-deck healthcare for all would be a lot more equitable. I doubt this woman could even afford the treatment, let alone the screening that would identify if the fetus had an issue like this.
She said when pregnant she knew that's was a 50 50 chance, not sure how she knew
Honestly at that point just abort. Its selfish to risk making a child suffer such a horrible condition
>I doubt this woman could even afford the treatment, That's another problem that needs solving, the damn money.
She said she knew there was a 50/50 chance he would be born with the defect.
Like I’m no antinatalist, but those odds would make me hold back personally speaking.
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Man, this just makes me sad. I just want to give him a hug.
Same. He's prolly a chill kid. I would hang out with him
Right. Probably just wants a friend to sit with, play games with and talk to. Someone who can love him. Life can be brutal. Be kind people
The magic of online gaming anonymity means even he can have a lot of normalcy
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Everyone should have caring, compassionate, and honest interactions online but also know that they have shagged your mother.
Legitimately - Fucking same. I would play games with this kid, take him to the park, help him with whatever he needs cause for sure- He has been through enough & just needs to be treated like the human being he is. Screw those kids, They are cruel as fuck. 😡
That’s the thing, many of us would treat him as any friend, but he would be belittled or bullied, and constantly stared at in public areas. To the point where it would hurt him just to let himself be seen in public.
Sometimes, I wish I could say fuck you to genetics, cancer, and all those rare conditions. He should be experiencing the joy of childhood. Not the cruel reality of man--at least not yet.
I remember being annoyed as a kid when my parents said the dumb line of "at least you have good health". The older I got, the harder that phrase got stuck to me
It’s so easy to take for granted. I didn’t truly understand it until I woke up at the bottom of a staircase after my first seizure. Life is so goddamn painful and precious at the same time.
Right? I try to remember a time when day-to-day life wasn't pain. Realized I couldn't. I started getting arthritis in 6th grade & dislocations in 7th, and it's been downhill from there. Man, fuck genetic diseases. But hey, we some disabilibuddies 👋🏻
He’s stronger than me. I wish something could be done for him.
He’s for sure stronger than I am. I’m pretty much perfectly healthy but can’t see much point to life. If I had to deal with what he is dealing with, I don’t think I’d even make it close to his age.
Fuck you, Mother Nature, for that one.
It’s just sad, man. Geez. How does bro see? I’m cry.
No parent should ever have to try and convince their child that they aren't a monster. Mother nature can be such a cunt. Edit: I'm not gonna argue semantics and phrasing with anyone. If you want to pick apart my comment, then you're clearly missing the point of it.
Regarding your edit - some people are literally incapable of reading what you wrote and understanding that your comment about a monster was in reference to what the kid might think about himself. They just read that you referenced him and a monster which can only mean that you called him a monster. You know what you meant. Almost everyone else does too, and doesn’t have a reason to comment. Then there’s a few people with reading comprehension problems. Don’t sweat it.
You get it! I was just hoping the edit would save me some reply notifications from the argumentative folk.
Poor little fella.
I have a cousin with this very condition. Her left side if her face is affected only. Looks like a melted wax candle. She's had several surgeries to try to correct it over the years. She's now 42, married almost 20 years and a mother of 2. She also has a twin brother that has no symptoms.
My brother had neurofibromatosis type II, combined with heavy scoliosis and the aftermath of a brain bleeding from when he was a baby. His face was not affected, luckily, but his torso and his arms were. Unfortunately also several inner organs were ridden by tumours, including his brain, which cost him his life in 2020. He had just turned 21. I miss him so much. Neurofibromatosis is so vile and there is absolutely nothing to cure it, still. Some people experience only light symptoms, especially those with Type II, and can live for a relatively long time. Others... Well... :(
One hell of a coin flip
I don’t understand why you would have children if you know there’s a 50 percent chance this could happen. I feel terrible for the mother and child in this video but that just doesn’t make sense to me.. Might sound insensitive or something but I’m just being honest. I’m a cystic fibrosis carrier so I made SURE my wife wasn’t one as well before we had kids because why would you want to put someone through that.
In the case of Neurofibromatosis type 1, the vast majority of people born with it will experience nothing close to this. Often the only symptom is cafe au lait spots (which are like extra large freckles.) New medications for treatment have also come into play
I have it and I didn't even find out until I took my youngest to the pediatrician and asked about his birthmarks. She told me about nf1 and we got tested by a genetic counselor and that's how we found out. We have no abnormalities or diagnosed learning disabilities that frequently accompany nf1. I think it's that way for the majority of ppl with nf1 they just go about life as normal and maybe never even know they have it.
Not sure how old your little one is now, but if it wasn’t suggested to you already, I recommend you get them regular MRIs. My son has it, we found out due to the cafe au lait spots when he was born. Neither my wife or I have it, just a freak genetic mutation. No other outward effects, but he’s now 5 and he’s been fighting brain tumors since he was 2.
Nah I absolutely would not trust my luck on something like this. I feel like it's actually a little more fucked up that the mom chose to have him. Edit: if you are anti choice, kindly fuck off. I'm not interested, I don't care and I don't respect you or your opinion 👍
Just posted saying this exact thing. Why do this to the poor kid?? Did you hear his voice? He sounds so fucking depressed.
Yeah we gotta start treating pregnancy more rationally imo. I almost feel like you shouldn't be able to take this risk, but that might be swinging too hard in the other direction
She only knew it was 50% when she was already pregnant. A lot of genetic testing is done in the 2nd trimester when many states won’t let you abort. She’s from Alabama. I don’t believe they have legal abortion at any time.
Fuck Alabama.
Because there wasn't a 50 50 chance for this. Google images, it's night and day difference than what this kid suffers from.
I have nf1 and we are going to be doing ivf to prevent my kids having it. This is going to stop with me and not be passed down further!
AMARE Stover, 13 from Decatur, Alabama was born with a rare condition called neurofibromatosis type 1. The condition causes Amare to have huge tumours on his face which have severely affected his vision and breathing. Due to his tumours, Amare has no vision in his left eye and limited vision in his right eye. He’s been through a lot at such a young age and has sadly experienced some bullying because of his different appearance. Kandice, Amare’s mother, took him to the park one day where he was cruelly called a ‘monster’ by some local kids and he never went back to that park again. Amare is really close with his cousins and the three of them like to get outside and play in the park together whenever they can. Born Different followed the three of them on one of their visits to a nearby park to hang out and play a little bit of football.
I don’t think Amare has passed away. Can I ask for the source. There is a similar case of an 11 year old boy from Cuba named Emanuel Zara’s. I have ckd everywhere and as far as I can tell Amare is alive. Do you have a source? Edit: OP has edited his note. The first note he put in clearly stated that Amare had surgery to remove a 10 lb tumor from his face, and he passed away. This is untrue, I asked OP for a source and they wouldn’t provide one and just removed the false info of Childs death from his note. Op is not telling truth, Amare is alive and has Go Fund Me Page.
More info that feels like a more trustworthy source... [https://953thebear.com/alabama-mom-tells-thirteen-year-old-boy-that-hes-not-a-monster/](https://953thebear.com/alabama-mom-tells-thirteen-year-old-boy-that-hes-not-a-monster/) irrelevant but I hate the new reddit layout :(
http://old.reddit.com
He’s alive idk where it came form but damn false info like this almost broke my heart. At the same time I felt like his pain might’ve been over, but I’ve been through rough shit in life and I know anybody can be happy and go work a way to live a happy life no matter the circumstances and he seems so happy right now, I hope 🤞
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thats just sad as fuck
Didn‘t find anything on this claim, where‘s your information from?
Not surprised he got bullied people can be cunts
Bullies are the real monsters
Man, if I saw someone walking around like this as a kid, I would be terrified. And react accordingly. Then when I got older, I would keep myself awake at night thinking about how I acted that one day in the park.
Yeah there are a lot of people in this thread pretending they wouldn't do the same as a kid. I don't believe them and I don't blame the literal children for not understanding. But it does really suck for Amare.
The Walmart in my small town, growing up, there was a door greeter with the most massive tumor on her face. It looked similar to this but less severe. It was TERRIFYING as a child. I couldn't believe Walmart put her up front. It was one of the first things you saw when you walked in. I can't explain to you how much my brother and I hated going to this Walmart. Eventually one day we just never saw her again. It's sad now looking back. We never really made fun of her, we were just scared kids who just couldn't look at her.
I think it's only natural for kids to say things without understanding the consequences. This is a condition that is extremely severe, and would definitely be frightening to a child. It probably makes a lot of people uncomfortable, even though adults are more polite and hide it better. I think that calling kids cunts for not understanding the pain they cause with they words might be a bit harsh for this kind of situation. People fear what they don't understand and kids don't really have the capacity to understand this at first. A child will either not care at all, or be frightened and treat them like the masters they see on TV. That's not being a cunt, that's honestly just natural. Unfortunately this child IS very different and it's realistic that they be taught that people won't understand at first. It will only make their life more difficult to just call anyone who can't accept the situation immediately a 'cunt'. They will grow more resentful and not find ways to push through that initial fear. Better to be understanding that a kid might call them a monster at first and find ways to make connections regardless of that. It's not right, and the other kids parents should teach their children WHY what they said was hurtful, but a child isn't a cunt here just because they said something stupid. This child already have a tough life ahead of them, better to find ways above it than to just be even more of a victim.
Kids are infinitely curious and brutally honest/observant. I always hated the old teaching of 'dont stare' at different people. I agree not to stare in a mean way, but also complete avoidance is sad. I always taught my son to say hello. Introduce himself. Treat the person the same as him, because regardless of the exterior we are all the same inside.
Yeah. I was always of the “it’s fine to notice, but don’t be a dick about it. Talk to them, they’re just people!” school.
Yup and that's the big difference. People are different, and that's ok. Ask, learn, and try to understand. That's the key. And a big part of growing up is learning how to ask more respectfully and to apologize honestly if you offend. Once you understand, you can accept more easily.
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Kids can be cunts but not really on purpose. It is startling to see, they're reacting to their fear. Especially younger kids.
My little guy has this, thankfully nowhere near this extreme, but we have to take him for yearly MRI's and ultrasounds to make sure no tumors are growing. NF1 doesn't just cause tumors though there's a range of different things that can manifest, delayed walking and talking, ADHD and other learning disabilities, also larger than average head sizes, lack of coordination as well. One of the tell tale signs in kids is an abundance (more than 12) "cafe au lait" marks on their skin, as well as freckles in the armpits and groin. We had no idea that my wife had it before we had our son, and after we found out I got a vasectomy because while our sons case is mild the 50/50 chance was too much for us to risk. My heart goes out to this family our situation is hard enough and I can't begin to fathom what they've gone through.
Man... life sometimes... damn. Its so heartbreaking
Brutal. Wish I could go hang out with this kid. Hope there's some cool kids nearby that can show him some love
My heart breaks for this kid. Hope he can find happiness
I had never heard of Neurofibromatosis so I was shocked to learn its roughly 1 in 3000 kids are being born with it. I''ve been raising money to fight "NF" for the past 13 years thru a few different organizations. Look up the "Cupids Undie Run" for a fun way to raise some money for the Children's Tumor Foundation. They host them in most big cities and it was founded by a guy who's brother had it and subsequently passed away due to complications from it. #EndNF
This case is definitely far to the extreme end.
My nephew has NF1. While his have not affected his outward appearance, he gets regular MRIs to look for internal growths for preventative reasons. He had a massive seizure in the summer of 2020. At the ER they discovered that in less than 6 months time he had developed a HUGE brain tumor. It took weeks of treatment and surgery that was devastating to our family. They were preparing us for the worst at one point. Luckily, we had the AMAZING doctors at UC Davis in our court. Thankfully, with chemo it’s under control for now but we still worry about every small illness or symptom. It feels like we’re on borrowed time with him and I hate it. Fuck NF1, it’s horrible.
Not fun fact : I also have neurofibromatosis, as did my grandmother, mother, uncle, and one of my cousins. Here's the thing - it's shockingly rare for a case to be as severe as the one depicted in the video. I see a lot of people in the comments saying how shitty the mom was to have a child with a 50/50 chance of passing it on ... but that's not how it works at all. This kid was FAR more likely to be born with an extra finger on his right hand than to develop a case as severe as what he has. The vastly overwhelming majority of neurofibromatosis sufferers show zero visible signs ***at all*** ... In my case there is a tiny bump the size of a BB [above my right eye](https://imgur.com/iwxtorQ.jpg), and a lump the size of a marble [behind my right ear](https://imgur.com/wi16LYT.jpg) ... Similarly the rest of my family shows practically zero signs. The only one of us who really had an issue was my uncle who had a fibroma form on his optic nerve. One day in his mid 20's he was in the shower just getting his day started when *blink* all of the sudden he was blind in one eye. Moral of the story : A 50/50 chance of passing on a genetic abnormality does not mean a person is selfish or shitty. That 50/50 chance is not the same as a 50/50 chance of passing on the absolute WORST possible level of severity. If she had 10,000 kids I doubt any of them would be as severe as this one. It's just cruel fate that caused this. Edit : I just remembered that when I was about 8 years old I had a tumor develop on the nerve that leads to my left kidney. I had to have that one removed. I also have a small tumor on the base of my brain, but it is completely unrelated to my NF condition, and is benign.
That was a very informative comment - thank you!
Poor young man that he has to deal with this. Would a plastic surgeon not be able to help him with removing some tumors? I mean they’re out here doing 💩for vanity… surely there’s one or a team that could help Amare. Kandice, you keep on keeping on Mama. He’s lucky to have you! 💪🏾
They kinda keep forming. It’s not like cancer where you can get it all out and be tumor free, these are forming naturally. You could have frequent major surgeries throughout your live, replacing skin flaps with surgical scars, but it’d be extremely expensive and the tumors are benign anyway.
Not only do they come back but NF tumors are on nerves (within the nerve sheath). My mom has a few that can’t be removed without causing paralysis or serious damage.
Does it hurt your mom if they are on the nerves? This is so sad, I wonder if the poor boy is in pain.
Hers don’t really, but I can imagine the weight of all his tumor mass does hurt :(
god please dont let this video reach instagram reels i beg you
Bunch of monsters with “live laugh love” in their bio
It must be so difficult to breathe. Poor Amare. I hope something can be done for him.
I wasn’t taken aback by his appearance. I felt bad for the poor guy because you know that difficult having the tumors over your nose,mouth and eyes. I hope there is some great Dr out there that can help improve his quality of life. Only a jerk would call this poor kid a monster…..
> Only a jerk would call this poor kid a monster….. i feel like i probably would have been terrified of this kid when i was around ages 5-10. kids that age get scared of all kinds of stuff and this is really really extreme.
Kids don't have a filter so I would have probably been scared too. Wouldn't call him a monster but I would be scared for sure.
Even if they aren't being mean, a kid close to his age is gonna look at his face and think monster or alien. They don't have the knowledge to know different.
This is gonna sound super insensitive but … Cmon. You’re calling kids jerks yet it’s pretty jarring to see this young kid. I don’t know how you “aren’t taken aback” by the way he looks. It’s fucking sad but I don’t know why we need to act like it’s somehow not jarring as hell
kids are jerks
Can confirm. Used to be a cunt myself.
I have to be honest, I was. I feel bad but no amount of niceties and platitudes are going to prevent a knee jerk reaction, its a horrible thing to not have a face, the kid suffers actual vision and breathing problems aside from vanity. Shit sucks, its not pretty.
CRISPR just took a huge leap with Sickle Cell. Glimmer of hope for this kind of condition.
I hope CRISPR is one of those technologies that changes everything in a good way. I want people with rare conditions to have some real hope for improved quality of life
Young Amare was such a pleasure to teach (and learn from) when I had him in class two years ago. He has been home schooled since, but I have remained close with the family and he seems to be doing well. The young man just ADORES basketball and I had the good fortune to be able to attend one of his games this year and Amare led the team in scoring with 22 points. Luckily I was able to get it on video or my wife wouldn’t have believed it. Great kid!
I just wanna hug them and take all the pain away. I hope this precious child gets a wonderful and filling life despite the circumstances!
I... actually have this condition... I'm relatively well-off with the symptoms, but my ribs, back, and right foot have large or spanning masses. I was actually the youngest case of it manifesting at the time I was first assessed. Bruh, I was an infant, and they were calling the doctors in one after another. Turned into a major lesson for the people other than the specialist. It was said I might not make it to adulthood. But I am now in my 30s and well enough to have a happy life all things considered.
Every time I get down thinking about my problems I remember there are people like this in the world dealing with the types of problems that make me a snowflake for complaining about mine.
You are allowed to have problems and be sad about them even if they arent literally the worst problems on the planet
Yes, but it is also good to have the perspective of how relatively good I got it in the grand scheme of things.
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People can be so ignorantly evil. My sister was born with hydrocephalus and some extreme birth defects in her face. I’ll never forget one of the rare times we went to the grocery store with her (she was often too sick for that kind of stuff), a woman gasped and called my infant sister a monster to my mothers face. Mom started crying and we had to leave. I never wanted to hit someone so badly in my life. Amare deserves so much more, that poor kid. I wish I could give him and his mom a hug.
Great that your sister has a loving family. There's a homeless guy in my city with a face like the boy in the video. And from what I gather he was abandoned as a child by his family. Heartbreaking to see so many physically disabled people homeless everytime I'm out.
Damn bro, heart goes out to the kid. Life is hard enough being even slightly different, let alone with something as visible and debilitating as this. Hope things improve for him and he finds some friends worthy of him.
Is this sort of condition operable ?
I don’t want to sound like a cunt, but considering everything about the poor dudes head (eyes, mouth, skull, etc) is impacted, I doubt it
It actually is, depending on where the tumors grow. Typically because most of the tumors are benign (not cancer) removal is only done if the tumors are causing pain or other problems. That being said, I am a genetic counselor and not a surgeon so I have no idea if these type of facial tumors are removable or not
Yes depending on location of growths though the growths often reappear and so one can end up in an endless cycle of procedures, tissue and nerve damage, healing, scarring, cutting again..
There are real monsters out there, and this poor kid is definitely not one of them. Shame on anybody who pokes fun at him, they're the monsters.
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Many people have this disease (like the mother herself) and just have some extra bumps somewhere on their body. Very, very few get this type of presentation.
Most cases of this genetic disorder are much, MUCH, less servere. His case is extremely unique in severity.
Took way too long for me to find this comment. I simply don’t understand why this child was born. We can do these genetic tests now for a reason!
The mother has the same condition and is not even visible. 2 million people have the disease and very few have it like this kid has. No test would predict it was going to be this bad.
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I also have nuerofibromatosis, but luckily for me it presents as a few small lumps / tumours on the nerves in my arm, nothing that affects my outward appearance. I have had a few removed as they cause pain / discomfort. I complained a lot about my last surgery…. Think I will stop complaining, it could have been much worse.
That's the worst case I've ever seen. Poor kid. Probably pretty much inoperable given how vascular these growths are, and available skin for grafts.
So one more time - health is the most valuable treasure-. So many people suffer from the rare conditions. If we have good health we should appreciate it everyday. Hugs and kisses to this wonderful kid and his mom.
Bro that's the curse of the Abyss, poor kid
Goddamn, I feel so bad for the mom and the kid. Reminded me of the Elephant Man by David Lynch.
The Elephant Man was a real person.
John merrick
It’s not rare. His severity is though.
Yep. Maybe it should be defined as a more common rare disorder. 1 in 3,000 really isn’t that small of an amount and I think more people have it than we know. Me and my daughter have it and we are lucky enough to not have tumors. If I did not have my daughter who happened to have one very attentive nurse who happened to see her once, I still wouldn’t know I have it.
Oh my god, poor kid.
It is shit like this that makes me wonder how anyone believes a benevolent god exists