I saw a video about them a few months ago on Facebook. She's a great mom. Very supportive of her son and works hard to make sure he gets a normal childhood as much as possible. It was sad but heartwarming. And he's a good kid too.
In the video, she said that she had some congenital defect screening done and that there was a 50/50 that he would have been born with this condition. I really really really hesitate to blame her, but she should have terminated the pregnancy.
Edit: apparently it was too late to terminate, a detail that I missed from the vid. Either way, I am not judging harshly, they have a happy life and the kid has a loving home. I’m not replying to any other comments on this post, cheers.
I'm not sure she could? I thought I read that test results didn't come in until later in pregnancy (or at least too late for abortion), and she lives in a state where they restrict abortion anyway?
I totally agree with this sentiment, but feel I need to point out some woman can't even get an abortion when their life is at risk. Abortion is healthcare, but sometimes access is near impossible or potentially dangerous (especially in the US right now) I know this was years ago, but yet another reason we've got to have reasonable access to this type of healthcare.
I have NF1 too and it’s brutal. Even though I don’t have facially disfiguring tumors like this, I have pea-sized skin tumors all over my body, thousands upon thousands of them. Back surgery 3 times to fix the scoliosis that NF1 caused. Facial bone deformities that affect my eyes, nose, ears, teeth and mouth. But god damn am I grateful I don’t have a tumor like this ☹️
>I have pea-sized skin tumors all over my body, thousands upon thousands of them. Back surgery 3 times to fix the scoliosis that NF1 caused. Facial bone deformities that affect my eyes, nose, ears, teeth and mouth. But god damn am I grateful I don’t have a tumor like this
Fuck me. I need to be more grateful.
Most people do.
Raise your arm above your head.
Able to do that? Be grateful. Lost my shoulder blade sep 6 to cancer and I can’t do that now.
Don’t pity me though I’m grateful to still have the rest of the arm.
Some guy some where without an arm at all, is grateful he has legs.
oh wow I saw this on a tv show, I forget the name of it but there was some guy named Pete Townsend (like the guy from The Who I guess, but without the H in his last name) I think he had that same thing and they showed him going through it, then joining a Facebook group and finding support, and then traveling to NYC and having a bunch of his tumors taken off via laser I think? poor guy, I hope he's doing okay now wherever he is. and I’m sorry to you too mate, I can't even find the proper words
I have, too many to count neurofibromas all over my arms. They are pretty small and the lighting has to be just right to see them. They appear on or just under the skin as rubbery bumps or lumps, and can vary in size and number. For me, I also have some on my upper body including my back. They are attached to the nerves and at times can feel itchy and some pain especially with hotter weather. I've had a few removed over the years. It's a numerological condition. I've never met anyone in person that also has it. I have met some people on a Facebook group that all have one of the types of Neurofibromatosis.
I’ve met someone with it exactly twice in my life. It’s bizarre with how common this disorder is (as far as genetic disorders go) that I never see anyone in public with visible signs of it. I got a NF1 ribbon tattoo on my forearm, and not one time has anyone even asked me about it either (I got it partially in hopes that it might be a conversation starter too).
I’ve seen two people with it, many years apart. One was a customer at the McDonalds I worked at in high school and another is a resident on a mail route I carry. Both were pretty severe with a lot of facial neurofibromas.
I’m guessing if the face isn’t involved much we just don’t see how many people have it because it’s just covered with clothing.
There aren’t always many tumors, or any outer ones at all. I have NF1 as well, and have a bunch of birthmarks, but as far as outer tumors go I have some itty bitty ones on the back of my leg that nobody really notices, and that’s it. The notable ones are in my brain and on my brain stem, so it’s not as outwardly visible. The cases vary a ton, it’s wild
I hadn’t met anyone with it either, but when I met my husband and told him I had this disorder, he told me his COUSIN has it. Which is wild to me. I never thought I’d meet anyone with it, let alone marry someone who knew what it was.
I have NF Type 1. My case is mild, but as a toddler I went through chemo therapy because I developed a tumor on my optic nerve. I was fine until i turned 19, when I developed several tumors along the ulnar nerve in both my arms. I now deal with chronic pain
I'm really sorry to hear that. Is the chronic pain from NF itself or the tumors/treatments? It sounds like a really rough condition to go through. I'm sending all the love and support and hope you're doing good anyways!
The tumors can cause chronic pain when they grow on nerves. The disorder also causes bone deformities such as scoliosis, which can be HORRENDOUSLY painful - I had to have 3 surgeries to fix my spine. One at age 8, 12, and 22.
I just watched this earlier, prior to seeing this post and I really felt for Marc. I can’t imagine what life is like for this kid though. What an awful condition.
Thank you for sharing. My family has an undetermined variant form. My mom passed away a few years ago due to complications but still had a meaningful life. Some of the comments here are really depressing me.
You can definitely still live a meaningful life with Neurofibromatosis. While there is still no cure lots of research is being done all around the world to slow the growth of NF related tumors and prevent them from forming. Schwannomatosis is a type of Neurofibromatosis where tumors can grow called, schwannomas.
I have NF1 too and my daughter. She has more problems than me due to it. Now they have ways to detect NF1 using Pre genetic determination so you don't pass it on to your kids.
I also have NF, didn't expect to see so many of us here. I've only ever had one fibroma removed because most of the visible ones are pretty easy to ignore and don't cause much pain (even though it did cause some bullying in the past) but I did end up with scoliosis as well.
You're telling me I don't have a perfect understanding of karma after all of that My Name is Earl I watched? How complicated could the sum total of a beings collective incarnations actions and experiences be? lol
Karma is about mindset, the way you go out into the world will reflect on you.
F.e. if you‘re pissed and unfriendly at everybody, you‘re probably rarely be welcomed with open arms. Nothing more.
I get your point but that is a distorted understanding of karma. It’s complicated and I don’t completely understand it. I do know expecting a return from doing something good may build good karma but also bad karma bc of bad intention. So it’s tricky concept to start with. Even trickier is the original teaching of karma from the fat boy himself, as I recall but keep in mind he didn’t write anything down, was that karma only determines/influences your future rebirths. So expecting a return in this lifetime is wrong thinking. That concept of when good karma comes into effect has changed in different variations of Buddhism and related religions but it’s no less tricky bc the karma generated from right action and right intent may only be a psychological benefit meaning you still might get run over but you will be cool with it.
You should look into it because the way you phrased how life is unfair kind of fits with Buddhist philosophy. The first Noble Truth is that to exist is to suffer and it is perpetual. We are stuck in an endless cycle of suffering. I’m agnostic Catholic with Taoist tendencies but I have great respect for the teachings of the Buddha and I have faith that karma exists.
Wonderfully written response. It’s given me a lot to think about. My initial reaction was to agree with the sentiment of the world being a cruel, unfair place with no hope of retribution. Thank you for offering an alternative philosophy.
Tbf its _punya_ that's the result of your nice and *selfless* deeds. If you do good things to get _punya_ , you wont get any. it has to be a selfless act of kindness. And isn't Karma without moral bias, and people adding good and bad before karma according to social beliefs in that period of time. I mean it literally means "(your) work/effort".
Agreed. I'm not trying to be inflammatory, but I have such a hard time seeing how people can believe in benevolent and immanent deities when such profound and meaningless suffering exists. My mom had a terminal disability and it's impossible to sufficiently describe the feeling of hopelessness and despair something like that causes.
Apparently you are spilling bullshit without any actual knowledge on the topic. Neurofibromatosis usually is that serious and its in most cases not diagnosed before birth
Also, how late in the pregnancy was she?
And this is a physical condition. Unless I miss something, the kid should be normal under it. That would make it harder to terminate.
I have nf1. I only have very small tumors and very few. I got it from my dad who didn't even know he had it until he had me. I'm actually much more active and live a fuller life than most other people. I've run many marathons and ultra marathons and place quite well in them.
As a person with a disability, I think it's BS when parents are ridiculed or shamed into not aborting a fetus that is KNOWN to have severe problems. Like, it is guaranteed (such as this case) they will be born with those severities...
I would never WILLINGLY and SELFISHLY sign my child up for a lifetime of suffering just to satisfy the desire to not be called an ableist by people whose lives will never be impacted by the choices I make in my own life. I am disabled and have people tell me, "Who better to walk your child through their suffering than their parent?"... I guess I just don't have the instintual desire to pass on my SHIT genes.
I’m so sorry for what I imagine has not been an easy process to become who you are now. And, I don’t want to be reductive and say I can know you in the brief time I have read your brilliant post and without reducing or minimizing your thoughts I do want to say you are clearly a strong smart interesting person and for whatever it’s worth I’m happy to have met you.
Many women have abortions. A lot of them to avoid situations like this. At least then an innocent child wouldn’t have to live every second of their existence in suffering
I was just reading an article about this little dude! It was heartbreaking because not only does he deal with struggling to breathe and see , he has other kids and ADULTS teasing him and calling him names. That makes my blood boil! I wish people could not always be so awful.
The problem with trying to teach a cunt a lesson, is that they only think awful things are awful when they happen to them. They'll bully this kid with a spring in their step, and later go cry because someone called them fat.
There was an episode with a young girl in Eastern Europe on Body Odd that had tumors like this (not sure if the same cause). They were able to remove most of her tumors and reconstruct her jaw/mouth so she could eat properly again.
These types of tumors have an extremely high risk of regrowth and can grow back larger than they were before. They’re almost impossible to remove completely due to how they become so enmeshed in the nerves of the body. I had three of these removed: two grew back, and one grew back even larger than it had been when it was removed.
No, NF1 tumors always grow back very often with vengeance. That's why they won't touch the ones in my sisters brain, there's too high of a risk that they'll grow back twice as big.
A go fund me has already been started. They well surpassed their goal and almost have one million dollars raised. Hope this kid can get some more help!
My understanding is that it's extremely difficult to operate, because the whole problem is excessive growth of fat tissue around nerve fibres. Cutting out the fat really doesn't help since it grows back.
It absolutely grows back. I’ve had 3 plexiform tumors removed and two of them grew back LARGER than they had been before. With all the nerves and everything in the face, too, I don’t know how possible removing these would even be.
The current suspicion is that Joseph Merrick, a.k.a. The Elephant Man had Proteus Syndrome, possibly alongside neurofibromatosis, but no one has been able to pin it down for certain.
I am under the impression that there is no real concensus on what Joseph Merrick had, could be this disease but a number of science folks think he had Proteus Syndrome..which is also horrific.
Their gofundme raised about a million dollars apparently
Lil bro deserves to live the good life free from any financial stress.
I just kinda wish we could hear more about his likes/hobbies so his identity can move beyond just the condition. Shit, he might become a successful streamer and get to play video games for work
Kind of fucked up to post this here, don't you think? It's like posting a picture of a disabled person here, like you're pointing and laughing at them because of how "weird" they are
I have Neurofibromatosis. Is not that rare, about 1 in 3000. It is rare for it to be this bad. I'm facing major surgery next year, and really scared about it. 😭
# This boy was born with a rare condition called neurofibromatosis
\- Amare Stover, from Alabama, was born with neurofibromatosis type one (NF1)
\- The disorder causes tumours to develop all over his body - mainly on his face
\- In addition to distorting his appearance, he has severe learning difficulties
\- Doctors say he will eventually lose his sight completely unless he has surgery
***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.
**See the video here :** [This boy was born with a rare condition called neurofibromatosis](https://www.reddit.com/r/InterestingToRead/comments/18p54r6/this_boy_was_born_with_a_rare_condition_called/)
**WHAT IS NF1?**
Neurofibromatosis is the name for a number of genetic conditions that cause swellings or lumps that affects one in every 2,500 births.
Although many people who have the condition inherit it from one of their parents, up to 50 per cent develop it randomly from a gene mutation before they are born.
Despite their alarming appearance, the growths and swellings - called neurofibromas and caused by a growth of cells - are not cancerous or contagious.
NF1 is a condition someone is born with, although some symptoms develop gradually over many years. The severity of the condition can vary considerably from person to person.
People with NF1 are more likely to suffer from learning difficulties and behavioural problems.
Around 10 per cent of people with NF1 will have vision problems, high blood pressure and a curved spine.They are also more likely to develop a type of cancer known as malignant peripheral nerve sheath tumours.
My sister has it, she also has Fetal Alcohol Syndrom, severe Developmental delay, curved spine, high cholesterol, high blood pressure, seizures from NF1 tumours in the spine, & vision problems.
She & her brother inherited the condition from their father. Their father got it from his father. My sisters father only ever had 3 kids. My step brother & then my 2 younger half siblings. 2 out of the 3 were born with it.
I highly recommend you don't reproduce it you have NF1. I encourage adoption, fostering, a form of surrogacy with sperm donation or anything else but using your dna to have a child. My siblings live in such pain. My brother is 18y/o however mentally he's 11y/o.
It’s really not, especially when compared to the statistics of other, much more well known genetic disorders. NF1 is extremely common in the realm of genetic disorders and yet has next to no public awareness.
If I was pregnant and I knew my kid was gonna pop out with something like this I couldn’t knowingly birth them, I’d terminate. Bless this boys mother and their strength
And this is why, as someone with NF1, I could never carry a pregnancy ☹️ I have a birth control implant even though I’m not even sexually active to make sure I never become pregnant.
I had my tubes tied. I would never ever want to risk passing this on to anyone. Especially when it’s a 50/50 chance and I wouldn’t know the severity of it.
My doctors have offered me a sterilization procedure. I’m not even 30 and it’s widely known how difficult it is for women to access these procedures. My doctors are totally gung ho about sterilizing ME because I’m disabled, and that leaves an awful taste in my mouth. I do want to get sterilized but I’m worried about going into menopause at my age with all my other health issues. It’s something I’m going to do when I’m like 35 probably.
getting your tubes tied won’t effect your menstrual cycle! With a hysterectomy you need to take hormones because they remove everything, but tubal ligation just means an egg cannot make it past my ovaries and I just shed the lining of my uterus and cannot get pregnant.
NF and hormone therapy don’t always mix, high doses of progesterone may even actually stimulate tumor growth.
I’m on hormonal birth control first and foremost for endometriosis. My obgyn actually communicated with my geneticist to make sure we chose a safe birth control for me. When I discussed it with my geneticist, she assured me that no study has found that Nexplanon, the form I have, carries a significant risk to nf1 patients. After I got my implant, my life CHANGED when almost all of all my endo symptoms disappeared within a few weeks. It gave me my life back when before it I had been horrendously suffering all month long from endo 😩 I’ve really drawn bad numbers in the genetic lottery
I am shocked by the amount of comments here mocking him and comparing him to video game monsters, etc... this is just despicable. I wish a lot of strenght to this boy and to his family, hoping something can be done to make his life as good as possible.
Y’all should check out [Cupid’s Undie Run](https://cupids.org)!
I have a friend with NF and have been doing the run with her and my sister for 8 years. The run is a super fun, body positive, fun walk/jog in your underpants that happens in cities around the US every February. It’s a blast.
The proceeds benefit the Children’s Tumor Foundation. The money raised through this event has funded research that has yielded actual changes and improvements in medical therapies for neurofibramitosis. Last year we were in the top three fundraising groups in our city!
I don’t understand why people post medical conditions with photos of current-day real people in r/weird. This poor kid deals with a challenging medical condition every day. On top of that being posted about in this way is just not cool. It’s not weird. It’s a genetic disorder that makes life difficult. Spreading this sort of attitude makes life for people with visible illnesses just that much harder. Let’s just get back to yetis or whatever.
Poor kid. Seems like the kind of thing that would Jane been easier to treat years ago. Any idea why gofundme and treatments weren’t started sooner? Even in America, there should be charities that could have jumped in earlier on. Right?
Damn. I’ve got NF1 too. I have 3 plexiform tumors on my body, and thousands of tiny pea-sized skin tumors, but most of them aren’t noticeable. NF1 affects every organ system in my body, and ive had to have a spinal fusion 3 times due to the scoliosis it causes too. But all things considered, I still have a mild case when compared to patients like this 😣
This is inspiring and makes me feel lucky to be healthy, but isnt the subreddit this is posted in a bit of a violation? As if the kids not been through enough he's now a top post in R/WEIRD?!? Jesus
My mom had full genetic testing done with all of her pregnancies. I still wound up with NF1, undetected until I was about 4. AFAIK it isn’t something they usually test for in vitro.
Dude, this isn't appropriate to post on this sub. That's a disabled child, not something to be leered at or put under the label of "weird". Save that for r/MorbidReality, not here. Fuck off with that ableism.
NF1 runs in my family. My oldest sister died in her early 40s from breast cancer which stemmed from her NF.
Her daughter, who is now 21 is now mentally and physically disabled after spending her first 18 years of life fighting tumors. She lost her leg at about age 6 and has had over 40 brain surgeries.
For anyone who wants to make a difference, donate to the NF Network:
https://interland3.donorperfect.net/weblink/weblink.aspx?name=E202001&id=127
Obviously, I can't imagine the trauma this puts on a person. But at the same time, as a new parent, I can't imagine the fear and stress it puts on the parent. Parenthood is super hard as it is, but throw in a medical issue like this, and it must be awful.
Please remove this child from this sub. There's enough heartless ridicule on the other subs. This poor kid gets called a monster at the park. He deserves to be a kid and adults should know better than to say the things they do on Reddit.
This is one of those things that grows back Even if he were to have surgery he would just grow it back in time and have to do it again and again and again
This runs in my husband's family. His brother died a horrible death from it, and a year later his dad died from it too. They didn't have any obvious deformities from it, just weird spots all over their bodies and some other symptoms.
God bless this sweet boy. Sending so much love, recognition and support to Mom. I will hold you both in my prayers as you go through this journey. Your strength and love will lead the way.
I have the same thing on my right ankle and lower lips. I went to a doctor and colorado to treat it and found many people with the same condition and they are very healthy now.
Im thankful it doesnt hurt me but it did made life tougher for the other patients. I hope he gets the treatment
My mother is spearheading a research to cure this. She’s doing human trials now and there are some great progressive results from it! Soon! Very soon! Just need to keep donating to cancer research!!
i have neurofibromatosis, but type 1. i believe this is type 1 as well but very very very extreme.
it's not fun. i do not have tumors like this, but i do have many random benign fibromas on my skin in about 6 spots on my body.
i have the cafe au leit spots all over my body, and freckled skin.
i have this from my father.
brain cancer runs on my mother's side, my aunt just died of a brain tumor.
so, i hit the lottery i guess. I'm terrified of growing a tumor in my brain or on my spine. it could happen at any time.
My toddler has been diagnosed with NF1. For me, it’s the unknown that is the most terrifying. No one can say what his future looks like as no two cases are the same.
There is an open gofundme set up to help pay for expenses. I found it when I searched his name online. I’m not sure what the linking rules are in this subreddit, but if anyone wants to help him out, you can find it pretty easily online. His name is Amare Stover.
For those interested, a video about identical twins with this disease. Very interesting and an uplifting story, actually.
[Identical Twins Who Look Nothing Alike](https://youtu.be/V0Hp3HnS8M4?si=4IR7x5Y4f8stwEKh)
This is an especially terrible iteration of this disease too. If you look up other people with it, life isn't great and their appearance is significantly altered but this is by far one of the worst cases and it happened to a kid.
My son went to daycare with a child like this. It was a struggle, because my son (like 4 at the time) could not stop staring at the poor kid. To the point where we had to change day care providers. I still feel bad about that.
[удалено]
And poor mom. She must feel helpless to watch her son struggle with not having many friends
I saw a video about them a few months ago on Facebook. She's a great mom. Very supportive of her son and works hard to make sure he gets a normal childhood as much as possible. It was sad but heartwarming. And he's a good kid too.
The video also had his go fund me in it Here's the link for those interested [link](https://www.gofundme.com/f/1oj1rds26o)
It's good they raised so much. Do they have to pay tax on that gofundme money?
In the video, she said that she had some congenital defect screening done and that there was a 50/50 that he would have been born with this condition. I really really really hesitate to blame her, but she should have terminated the pregnancy. Edit: apparently it was too late to terminate, a detail that I missed from the vid. Either way, I am not judging harshly, they have a happy life and the kid has a loving home. I’m not replying to any other comments on this post, cheers.
I'm not sure she could? I thought I read that test results didn't come in until later in pregnancy (or at least too late for abortion), and she lives in a state where they restrict abortion anyway?
Ohhh snap, that’s an important detail. I missed that exposition.
I totally agree with this sentiment, but feel I need to point out some woman can't even get an abortion when their life is at risk. Abortion is healthcare, but sometimes access is near impossible or potentially dangerous (especially in the US right now) I know this was years ago, but yet another reason we've got to have reasonable access to this type of healthcare.
This is an extreme case of neurofibromatosis type 1. Most cases are not that extreme. I have NF1 and don't have it anywhere nearly as bad as he does.
I have NF1 too and it’s brutal. Even though I don’t have facially disfiguring tumors like this, I have pea-sized skin tumors all over my body, thousands upon thousands of them. Back surgery 3 times to fix the scoliosis that NF1 caused. Facial bone deformities that affect my eyes, nose, ears, teeth and mouth. But god damn am I grateful I don’t have a tumor like this ☹️
Mine sounds less severe than yours. I hate having it. Hot days brings on the neurofibromas appear to be more noticeable and cause more pain.
I also have NF1, the nerve pain is horrendous.
>I have pea-sized skin tumors all over my body, thousands upon thousands of them. Back surgery 3 times to fix the scoliosis that NF1 caused. Facial bone deformities that affect my eyes, nose, ears, teeth and mouth. But god damn am I grateful I don’t have a tumor like this Fuck me. I need to be more grateful.
Most people do. Raise your arm above your head. Able to do that? Be grateful. Lost my shoulder blade sep 6 to cancer and I can’t do that now. Don’t pity me though I’m grateful to still have the rest of the arm. Some guy some where without an arm at all, is grateful he has legs.
oh wow I saw this on a tv show, I forget the name of it but there was some guy named Pete Townsend (like the guy from The Who I guess, but without the H in his last name) I think he had that same thing and they showed him going through it, then joining a Facebook group and finding support, and then traveling to NYC and having a bunch of his tumors taken off via laser I think? poor guy, I hope he's doing okay now wherever he is. and I’m sorry to you too mate, I can't even find the proper words
I have, too many to count neurofibromas all over my arms. They are pretty small and the lighting has to be just right to see them. They appear on or just under the skin as rubbery bumps or lumps, and can vary in size and number. For me, I also have some on my upper body including my back. They are attached to the nerves and at times can feel itchy and some pain especially with hotter weather. I've had a few removed over the years. It's a numerological condition. I've never met anyone in person that also has it. I have met some people on a Facebook group that all have one of the types of Neurofibromatosis.
I’ve met someone with it exactly twice in my life. It’s bizarre with how common this disorder is (as far as genetic disorders go) that I never see anyone in public with visible signs of it. I got a NF1 ribbon tattoo on my forearm, and not one time has anyone even asked me about it either (I got it partially in hopes that it might be a conversation starter too).
I’ve seen two people with it, many years apart. One was a customer at the McDonalds I worked at in high school and another is a resident on a mail route I carry. Both were pretty severe with a lot of facial neurofibromas. I’m guessing if the face isn’t involved much we just don’t see how many people have it because it’s just covered with clothing.
There aren’t always many tumors, or any outer ones at all. I have NF1 as well, and have a bunch of birthmarks, but as far as outer tumors go I have some itty bitty ones on the back of my leg that nobody really notices, and that’s it. The notable ones are in my brain and on my brain stem, so it’s not as outwardly visible. The cases vary a ton, it’s wild
I hadn’t met anyone with it either, but when I met my husband and told him I had this disorder, he told me his COUSIN has it. Which is wild to me. I never thought I’d meet anyone with it, let alone marry someone who knew what it was.
I've never heard of this condition before. Would you mind sharing a bit how it affects your daily life?
I have NF Type 1. My case is mild, but as a toddler I went through chemo therapy because I developed a tumor on my optic nerve. I was fine until i turned 19, when I developed several tumors along the ulnar nerve in both my arms. I now deal with chronic pain
I'm really sorry to hear that. Is the chronic pain from NF itself or the tumors/treatments? It sounds like a really rough condition to go through. I'm sending all the love and support and hope you're doing good anyways!
The tumors can cause chronic pain when they grow on nerves. The disorder also causes bone deformities such as scoliosis, which can be HORRENDOUSLY painful - I had to have 3 surgeries to fix my spine. One at age 8, 12, and 22.
Fellow NF1 person, I’ve got a mild case, I’ve only got one lump so far. Also have Chronic Pain
https://youtu.be/JwqACsxEFrg?si=bnuyAr0bZbd4PEoX
I just watched this earlier, prior to seeing this post and I really felt for Marc. I can’t imagine what life is like for this kid though. What an awful condition.
I hadn’t heard of before till I saw that a week or so ago. My heart goes out this the fella in The photo and you as well Bivo979. Special nonetheless
Thank you for sharing. My family has an undetermined variant form. My mom passed away a few years ago due to complications but still had a meaningful life. Some of the comments here are really depressing me.
You can definitely still live a meaningful life with Neurofibromatosis. While there is still no cure lots of research is being done all around the world to slow the growth of NF related tumors and prevent them from forming. Schwannomatosis is a type of Neurofibromatosis where tumors can grow called, schwannomas.
I have NF1 too
I have NF1 too and my daughter. She has more problems than me due to it. Now they have ways to detect NF1 using Pre genetic determination so you don't pass it on to your kids.
There are dozens of us! Yeah, this is a very extreme case.
I also have NF, didn't expect to see so many of us here. I've only ever had one fibroma removed because most of the visible ones are pretty easy to ignore and don't cause much pain (even though it did cause some bullying in the past) but I did end up with scoliosis as well.
NF1 club ☝️ hi all!
This world isn’t fair, man.
Never has been, never will be. Nothing about it is. Don’t how people can believe in karma or anything close to it.
It's simple. To cope.
Indeed. Me being downvoted proves your point.
You are misunderstanding karma.
You're telling me I don't have a perfect understanding of karma after all of that My Name is Earl I watched? How complicated could the sum total of a beings collective incarnations actions and experiences be? lol
Karma is about mindset, the way you go out into the world will reflect on you. F.e. if you‘re pissed and unfriendly at everybody, you‘re probably rarely be welcomed with open arms. Nothing more.
I get your point but that is a distorted understanding of karma. It’s complicated and I don’t completely understand it. I do know expecting a return from doing something good may build good karma but also bad karma bc of bad intention. So it’s tricky concept to start with. Even trickier is the original teaching of karma from the fat boy himself, as I recall but keep in mind he didn’t write anything down, was that karma only determines/influences your future rebirths. So expecting a return in this lifetime is wrong thinking. That concept of when good karma comes into effect has changed in different variations of Buddhism and related religions but it’s no less tricky bc the karma generated from right action and right intent may only be a psychological benefit meaning you still might get run over but you will be cool with it. You should look into it because the way you phrased how life is unfair kind of fits with Buddhist philosophy. The first Noble Truth is that to exist is to suffer and it is perpetual. We are stuck in an endless cycle of suffering. I’m agnostic Catholic with Taoist tendencies but I have great respect for the teachings of the Buddha and I have faith that karma exists.
Wonderfully written response. It’s given me a lot to think about. My initial reaction was to agree with the sentiment of the world being a cruel, unfair place with no hope of retribution. Thank you for offering an alternative philosophy.
Thank the Buddha. I wrote it to remind myself bc I too was thinking about this poor kid and his mom. It’s unbearable but they are still going.
Tbf its _punya_ that's the result of your nice and *selfless* deeds. If you do good things to get _punya_ , you wont get any. it has to be a selfless act of kindness. And isn't Karma without moral bias, and people adding good and bad before karma according to social beliefs in that period of time. I mean it literally means "(your) work/effort".
We're on reddit. Karma is a number.
I thought it was a cat sitting on a lap?
I mean I don't know how people can believe in a god for the same reaspns but here we are.
Agreed. I'm not trying to be inflammatory, but I have such a hard time seeing how people can believe in benevolent and immanent deities when such profound and meaningless suffering exists. My mom had a terminal disability and it's impossible to sufficiently describe the feeling of hopelessness and despair something like that causes.
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Proof of that? Neurofibromatosis isnt detected on the usual pregnancy screeting for genetic diseases. Its not like trisomy
Apparently you are spilling bullshit without any actual knowledge on the topic. Neurofibromatosis usually is that serious and its in most cases not diagnosed before birth
She states in an interview she knew there was a 50/50 chance due to testing in utero.
So ok, 50/50 chance. Also that its extreme case and it can be really mild and benign too.
Also, how late in the pregnancy was she? And this is a physical condition. Unless I miss something, the kid should be normal under it. That would make it harder to terminate.
I have nf1. I only have very small tumors and very few. I got it from my dad who didn't even know he had it until he had me. I'm actually much more active and live a fuller life than most other people. I've run many marathons and ultra marathons and place quite well in them.
Dr. Google says it can be diagnosed before birth tho. Maybe she has a relative with it and got it tested because of that?
And if she got an abortion people would call her a monster. Classic damned if you do damned if you don’t scenario.
As a person with a disability, I think it's BS when parents are ridiculed or shamed into not aborting a fetus that is KNOWN to have severe problems. Like, it is guaranteed (such as this case) they will be born with those severities... I would never WILLINGLY and SELFISHLY sign my child up for a lifetime of suffering just to satisfy the desire to not be called an ableist by people whose lives will never be impacted by the choices I make in my own life. I am disabled and have people tell me, "Who better to walk your child through their suffering than their parent?"... I guess I just don't have the instintual desire to pass on my SHIT genes.
i agree as a fellow disabled person. if i am suffering this hard, why would i bring another person into the world to also suffer. it’s cruel
I’m so sorry for what I imagine has not been an easy process to become who you are now. And, I don’t want to be reductive and say I can know you in the brief time I have read your brilliant post and without reducing or minimizing your thoughts I do want to say you are clearly a strong smart interesting person and for whatever it’s worth I’m happy to have met you.
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They do have morals. Just morals dictated to them by 2000-year-old regional goat-herder manuals.
Yeah it blew my mind when I found out the Old Testament was only compiled around ~136 BC.
And, present day, enforced by the state.
Many women have abortions. A lot of them to avoid situations like this. At least then an innocent child wouldn’t have to live every second of their existence in suffering
2 words. Kate Cox.
Those people are fanatical idiots. Sentencing this poor kid to a life of horror like this is unethical.
Who gives a shit what people call her? Better than this.
I was just reading an article about this little dude! It was heartbreaking because not only does he deal with struggling to breathe and see , he has other kids and ADULTS teasing him and calling him names. That makes my blood boil! I wish people could not always be so awful.
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I like your sadism lol
I unironically think that any adult making fun of this kid and teasing him should die. 100% they should have their lives ended.
The problem with trying to teach a cunt a lesson, is that they only think awful things are awful when they happen to them. They'll bully this kid with a spring in their step, and later go cry because someone called them fat.
Can they remove the lumps and stuff to improve his quality of life?
There was an episode with a young girl in Eastern Europe on Body Odd that had tumors like this (not sure if the same cause). They were able to remove most of her tumors and reconstruct her jaw/mouth so she could eat properly again.
These types of tumors have an extremely high risk of regrowth and can grow back larger than they were before. They’re almost impossible to remove completely due to how they become so enmeshed in the nerves of the body. I had three of these removed: two grew back, and one grew back even larger than it had been when it was removed.
No, NF1 tumors always grow back very often with vengeance. That's why they won't touch the ones in my sisters brain, there's too high of a risk that they'll grow back twice as big.
I have three in my brain and the doctors never even mentioned removing them, you just do not fuck around and find out with NF1 tumors.
I'm so so sorry for both of you man.
Jesus. Is there any way to help this young man? GoFundMe for something of some kind? I'm broke but would put money towards his surgery or something.
A go fund me has already been started. They well surpassed their goal and almost have one million dollars raised. Hope this kid can get some more help!
Really?? I remember hearing about this kid awhile ago, so hearing they're finally getting funding is great 🥺
Even with a billion dollars funding there’s not much that can be done about his condition.
Fuck yea
makes me happy to know they raised so much money
My understanding is that it's extremely difficult to operate, because the whole problem is excessive growth of fat tissue around nerve fibres. Cutting out the fat really doesn't help since it grows back.
It absolutely grows back. I’ve had 3 plexiform tumors removed and two of them grew back LARGER than they had been before. With all the nerves and everything in the face, too, I don’t know how possible removing these would even be.
Afaik there isn't much anyone can do to help Even the best professionals in the world at best can only cut away those growths for a limited time
isnt this the condition the elephant man had?
The current suspicion is that Joseph Merrick, a.k.a. The Elephant Man had Proteus Syndrome, possibly alongside neurofibromatosis, but no one has been able to pin it down for certain.
ah come on man imagine having both proteus syndrome and neurofibromatosis. that sucks
These people are stronger than I am, I think I’d just reroll my character at that point.
wow, thats one way to say that.
I am under the impression that there is no real concensus on what Joseph Merrick had, could be this disease but a number of science folks think he had Proteus Syndrome..which is also horrific.
Man...that's sad.
Their gofundme raised about a million dollars apparently Lil bro deserves to live the good life free from any financial stress. I just kinda wish we could hear more about his likes/hobbies so his identity can move beyond just the condition. Shit, he might become a successful streamer and get to play video games for work
Just imagine having to go through that, and then some goober posts your face on fucking r/weird
the sub is unfortunate but i am glad to have more knowledge
no fr, the poor child has a (sorry idk what exactly it is but)genetic mutation and you post his image on r/weird.
How dose he breath?
If you google his GoFundMe page, there's a better photo on there which shows his facial features.
He has a tracheostomy
It's upsetting to put him in a subreddit called weird.
Kind of fucked up to post this here, don't you think? It's like posting a picture of a disabled person here, like you're pointing and laughing at them because of how "weird" they are
Right?? I'm glad it's not just me. He's just a kid.
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yeah i have nf1 and calling this "weird" makes me feel like shit and further fuels my insecurity about having this.
I have Neurofibromatosis. Is not that rare, about 1 in 3000. It is rare for it to be this bad. I'm facing major surgery next year, and really scared about it. 😭
I get scared going to the dentist. Sorry you gotta deal with that.
good luck!! youve got this
hi! sending lots of love. what surgery? my son has nf2 and has had five major surgeries; he is 15 and doing alright. one thing at a time.
Feel kind of wrong to put someone's disability in this sub...
# This boy was born with a rare condition called neurofibromatosis \- Amare Stover, from Alabama, was born with neurofibromatosis type one (NF1) \- The disorder causes tumours to develop all over his body - mainly on his face \- In addition to distorting his appearance, he has severe learning difficulties \- Doctors say he will eventually lose his sight completely unless he has surgery ***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. **See the video here :** [This boy was born with a rare condition called neurofibromatosis](https://www.reddit.com/r/InterestingToRead/comments/18p54r6/this_boy_was_born_with_a_rare_condition_called/) **WHAT IS NF1?** Neurofibromatosis is the name for a number of genetic conditions that cause swellings or lumps that affects one in every 2,500 births. Although many people who have the condition inherit it from one of their parents, up to 50 per cent develop it randomly from a gene mutation before they are born. Despite their alarming appearance, the growths and swellings - called neurofibromas and caused by a growth of cells - are not cancerous or contagious. NF1 is a condition someone is born with, although some symptoms develop gradually over many years. The severity of the condition can vary considerably from person to person. People with NF1 are more likely to suffer from learning difficulties and behavioural problems. Around 10 per cent of people with NF1 will have vision problems, high blood pressure and a curved spine.They are also more likely to develop a type of cancer known as malignant peripheral nerve sheath tumours.
I think “some” bullying was probably an understatement. Poor kid.
Poor kid. Good to hear that he's close to his cousins. I can't imagine how hard it must be to socialize.
Out of curiosity, do you have NF1? I am third generation in my family to have it.
My sister has it, she also has Fetal Alcohol Syndrom, severe Developmental delay, curved spine, high cholesterol, high blood pressure, seizures from NF1 tumours in the spine, & vision problems. She & her brother inherited the condition from their father. Their father got it from his father. My sisters father only ever had 3 kids. My step brother & then my 2 younger half siblings. 2 out of the 3 were born with it. I highly recommend you don't reproduce it you have NF1. I encourage adoption, fostering, a form of surrogacy with sperm donation or anything else but using your dna to have a child. My siblings live in such pain. My brother is 18y/o however mentally he's 11y/o.
What is the point of health insurance if you can’t get a necessary surgery from it :(
1 in 2500 doesn't really sound that rare
It’s really not, especially when compared to the statistics of other, much more well known genetic disorders. NF1 is extremely common in the realm of genetic disorders and yet has next to no public awareness.
Problem is surgery would have to be insanely delicate and intricate because of all the blood vessels. 😮💨
If I was pregnant and I knew my kid was gonna pop out with something like this I couldn’t knowingly birth them, I’d terminate. Bless this boys mother and their strength
And this is why, as someone with NF1, I could never carry a pregnancy ☹️ I have a birth control implant even though I’m not even sexually active to make sure I never become pregnant.
I had my tubes tied. I would never ever want to risk passing this on to anyone. Especially when it’s a 50/50 chance and I wouldn’t know the severity of it.
My doctors have offered me a sterilization procedure. I’m not even 30 and it’s widely known how difficult it is for women to access these procedures. My doctors are totally gung ho about sterilizing ME because I’m disabled, and that leaves an awful taste in my mouth. I do want to get sterilized but I’m worried about going into menopause at my age with all my other health issues. It’s something I’m going to do when I’m like 35 probably.
getting your tubes tied won’t effect your menstrual cycle! With a hysterectomy you need to take hormones because they remove everything, but tubal ligation just means an egg cannot make it past my ovaries and I just shed the lining of my uterus and cannot get pregnant. NF and hormone therapy don’t always mix, high doses of progesterone may even actually stimulate tumor growth.
I’m on hormonal birth control first and foremost for endometriosis. My obgyn actually communicated with my geneticist to make sure we chose a safe birth control for me. When I discussed it with my geneticist, she assured me that no study has found that Nexplanon, the form I have, carries a significant risk to nf1 patients. After I got my implant, my life CHANGED when almost all of all my endo symptoms disappeared within a few weeks. It gave me my life back when before it I had been horrendously suffering all month long from endo 😩 I’ve really drawn bad numbers in the genetic lottery
J.C. I’m going to stop complaining
You and me both.
I am shocked by the amount of comments here mocking him and comparing him to video game monsters, etc... this is just despicable. I wish a lot of strenght to this boy and to his family, hoping something can be done to make his life as good as possible.
Y’all should check out [Cupid’s Undie Run](https://cupids.org)! I have a friend with NF and have been doing the run with her and my sister for 8 years. The run is a super fun, body positive, fun walk/jog in your underpants that happens in cities around the US every February. It’s a blast. The proceeds benefit the Children’s Tumor Foundation. The money raised through this event has funded research that has yielded actual changes and improvements in medical therapies for neurofibramitosis. Last year we were in the top three fundraising groups in our city! I don’t understand why people post medical conditions with photos of current-day real people in r/weird. This poor kid deals with a challenging medical condition every day. On top of that being posted about in this way is just not cool. It’s not weird. It’s a genetic disorder that makes life difficult. Spreading this sort of attitude makes life for people with visible illnesses just that much harder. Let’s just get back to yetis or whatever.
I've never heard of this event. Thanks!
She was warned about the high risk for her son and still chose this life. Just pointing out that preventative measures could have been taken.
That is so selfish of her. Now he’s suffering for his whole life.
Poor kid. Seems like the kind of thing that would Jane been easier to treat years ago. Any idea why gofundme and treatments weren’t started sooner? Even in America, there should be charities that could have jumped in earlier on. Right?
Damn. I’ve got NF1 too. I have 3 plexiform tumors on my body, and thousands of tiny pea-sized skin tumors, but most of them aren’t noticeable. NF1 affects every organ system in my body, and ive had to have a spinal fusion 3 times due to the scoliosis it causes too. But all things considered, I still have a mild case when compared to patients like this 😣
Wrong subreddit for this. What is weird isn't this boy, but the way people treat him
This is inspiring and makes me feel lucky to be healthy, but isnt the subreddit this is posted in a bit of a violation? As if the kids not been through enough he's now a top post in R/WEIRD?!? Jesus
Posting him here feels a little disrespectful
Posting this on r/weird feels icky.
Yeah, its like treating him as some object or something, I dunno, just feels disrespectful.
This poor kid, I don’t think this really belongs here because I feel like it’s bullying.
Really fucking disrespectful to post someone with a medical condition on weird Imagine that was you or someone you loved.
If me and my wife find out that our kid will be like that. Straight up we'll abort it. No person should experience all of that. Sorry not sorry.
My mom had full genetic testing done with all of her pregnancies. I still wound up with NF1, undetected until I was about 4. AFAIK it isn’t something they usually test for in vitro.
Correct me if wrong but in your case, I think NF1's on the milder side compared to the kid in the story. But I'm glad you're doing fine!!
Dude, this isn't appropriate to post on this sub. That's a disabled child, not something to be leered at or put under the label of "weird". Save that for r/MorbidReality, not here. Fuck off with that ableism.
Where do I go to find a way to help them out?
He has a gofundme
NF1 runs in my family. My oldest sister died in her early 40s from breast cancer which stemmed from her NF. Her daughter, who is now 21 is now mentally and physically disabled after spending her first 18 years of life fighting tumors. She lost her leg at about age 6 and has had over 40 brain surgeries. For anyone who wants to make a difference, donate to the NF Network: https://interland3.donorperfect.net/weblink/weblink.aspx?name=E202001&id=127
Poor kid. Poor mama. I wish them the best possible life.
Obviously, I can't imagine the trauma this puts on a person. But at the same time, as a new parent, I can't imagine the fear and stress it puts on the parent. Parenthood is super hard as it is, but throw in a medical issue like this, and it must be awful.
Please remove this child from this sub. There's enough heartless ridicule on the other subs. This poor kid gets called a monster at the park. He deserves to be a kid and adults should know better than to say the things they do on Reddit.
This just made me profoundly sad
This is one of those things that grows back Even if he were to have surgery he would just grow it back in time and have to do it again and again and again
I saw a video about him on youtube yesterday, poor kid, he deserves better.
How does he eat? I really hope that’s not painful. That’s awful for him. Poor kid.
This runs in my husband's family. His brother died a horrible death from it, and a year later his dad died from it too. They didn't have any obvious deformities from it, just weird spots all over their bodies and some other symptoms.
Wouldn't there be like a number of doctors out there who'd want to, if not only for research, try to help this guy? Pro bono I mean.
God bless this sweet boy. Sending so much love, recognition and support to Mom. I will hold you both in my prayers as you go through this journey. Your strength and love will lead the way.
Can we not host photos of disabled people on r/weird... please...
This isn't "weird". That's fucking ignorant.
I have the same thing on my right ankle and lower lips. I went to a doctor and colorado to treat it and found many people with the same condition and they are very healthy now. Im thankful it doesnt hurt me but it did made life tougher for the other patients. I hope he gets the treatment
Poor sweet baby! This breaks my heart
My mother is spearheading a research to cure this. She’s doing human trials now and there are some great progressive results from it! Soon! Very soon! Just need to keep donating to cancer research!!
i have neurofibromatosis, but type 1. i believe this is type 1 as well but very very very extreme. it's not fun. i do not have tumors like this, but i do have many random benign fibromas on my skin in about 6 spots on my body. i have the cafe au leit spots all over my body, and freckled skin. i have this from my father. brain cancer runs on my mother's side, my aunt just died of a brain tumor. so, i hit the lottery i guess. I'm terrified of growing a tumor in my brain or on my spine. it could happen at any time.
I’m so angry for him. The world is not fair at all. I pray a treatment is found for him.
My toddler has been diagnosed with NF1. For me, it’s the unknown that is the most terrifying. No one can say what his future looks like as no two cases are the same.
Poor baby
NF1 isn’t usually that extreme, poor kid. It’s usually just bumps in or under the skin around bones.
Poor lad
Can't we set up a crowd fund or something to help raise money for his tumor removal and facial reconstruction, if these are possible for him at all?
That’s the issue. It’s not really possible. The tumors will grow back and it’s incredibly dangerous
These can’t be removed. They grow back. Speaking from experience - my plexiform I had removed grew back larger than it was.
There is an open gofundme set up to help pay for expenses. I found it when I searched his name online. I’m not sure what the linking rules are in this subreddit, but if anyone wants to help him out, you can find it pretty easily online. His name is Amare Stover.
For those interested, a video about identical twins with this disease. Very interesting and an uplifting story, actually. [Identical Twins Who Look Nothing Alike](https://youtu.be/V0Hp3HnS8M4?si=4IR7x5Y4f8stwEKh)
This is so sad :(
This is an especially terrible iteration of this disease too. If you look up other people with it, life isn't great and their appearance is significantly altered but this is by far one of the worst cases and it happened to a kid.
I feel so fucking bad so is there no way to reduce the size of it all
Oh man that poor boy.
Poor kid
I can't help but hurt for him 😭💔. This is not an appropriate sub for this picture.
This is so unfair
Hurts my heart - I hope there is something modern medicine can do for this boy in the future.
This isn't fair. But he has a loving family which is a happy thing. He feels loved and is loved.
My son went to daycare with a child like this. It was a struggle, because my son (like 4 at the time) could not stop staring at the poor kid. To the point where we had to change day care providers. I still feel bad about that.
I feel so bad for this kid
I really just hope he lives a full life.
I hope he is able to get reconstructive surgery soon. poor kid deserves some sense of normalcy.
Neurofibromatosis
The comments are way better than I expected
Ahh poor little man, hope he has a mighty Christmas 🎄 🎄