Mother spreads awareness about rare genetic disorder neurofibromatosis

There's no cure for neurofibromatosis (NF), and it's been said that the rare genetic disorder is becoming more common.
Now a local mother, who was born with the rare disease, is speaking out as her son undergoes his own battle with neurofibromatosis type 1 (NF1).
At four weeks old, doctors found a large plexiform tumor behind Bryson's eye, face, and brain.

[@bluechex7881]

Praying for that beautiful child.

[@mariacrochet8379]

My teenager has it. Was diagnosed shortly after birth, but no symptoms appeared until puberty. Plexiforms many, and smaller stature than his friends. It's scary but we hold on tight and pray.

[@JOSHUACHIOCCI]

Bless him i also have NF1 had an operation yesterday, it was also a plexiform. It was under me tongue

[@aaronking2407]

I have Neurofibromatosis. I have little tumours, but hundreds of cafe au lait spots all around my body. I also have scoliosis because of the disease.

[@peachienickle]

You can see the cafe au lait on both my offspring because I passed NF1 onto them and their mother, my wife, does not have it.. It is hard to see my cafe au lait because I have partial Albinism which I did not pass on. Both my offspring and myself have scoliosis, where my youngest, now 24, has it worse.

[@katrinawall7566]

It's hereditary my friend has the same disorder. His is in his spine. He also in a wheelchair. He is suffering from the disorder. I hope the baby recovers from the disorder.

[@JemJam2976]

It's also spontaneous. I was the first in my family known to have it. My daughter has it as well

[@Mishka7653]

This hit home to me I have this condition so I feel for this family ❤❤

[@CudaBarr-mt2kj]

I have it too

[@JemJam2976]

Same

[@dianaverschure3360]

YET YOUR STILL PASSING IT ON TO INNOCENT CHILDREN SO SELFISH EVERY NEW BIRTH IT COMES OUT STRONGER WITH EACH GENERATION I DID MY RESEARCH

[@JemJam2976]

Unless you are living with it. And can talk from experience, take your research and shove it somewhere.​@@dianaverschure3360

[@JemJam2976]

Who are you to judge? Just because you looked up a few things doesn't mean you know anything​@@dianaverschure3360

[@stephaniec3722]

My husband has it and developed testicular cancer. They removed the tumor but he has nerve pain and several large moles all over his body. The cancer specialists told him that chemo isn't an option for him and that only radiation can be used due to NF1. I'm so confused now.

[@peachienickle]

I hope the radiation therapy works for your husband. I have NF1 and passed it onto both our offspring. Their mother, my wife, does not have NF1 and she supports all three of us. The three of us us has not developed the 30% chance of getting cancer and were amazed when we heard the percentage of developing cancer was so high. Our specialist, here in Canada, never told this to us.

[@shannonraymartin3176]

🥰🥰🥰🥰HE'S SO CUTE, AND MOM IS JUST AS BEAUIFUL🥰🥰🥰

[@JemJam2976]

I can honestly say and mean every bit of it, that my nerves get on my nerves

[@lindahunt6644]

My son has NF1. But has decided not to have children.

[@MustyBastard]

It is mostly girls with NF that are passing it on. Most men who have it, struggle to find a mate who will accept them. In this day and age it is hard enough for regular men to find a mate.

[@peachienickle]

Our youngest who is turning 25 this fall, now 2024, has chosen to not give birth to any children. I have NF1 and passed it onto both our offspring. Our oldest has chosen the same option.

[@MustyBastard]

@enickle thank god. Stop the pattern of abuse it is the only way we stop this horrible condition. It is the most inherited genetic disorder for a reason.

[@chevywillow-ii2jy]

I have this and it really sucks

[@kennetbojebendtsen5989]

Big love from denmark have nf1 to

[@Maddddy22]

I have Neurofibromatosis type 1 do have left eye that different and I am also an actress.

[@CudaBarr-mt2kj]

I have a estimated thousand tumors in my back three tumors grow on my spine

[@pinacoloda226]

Did you know you had this condition and did you know it was hereditary??

[@gingercat7925]

It is 50/50 if it gets passed on to offspring, also 50% of NF occurrences are spontaneous.

[@tdunbar1489]

I also have noformatos type 1 and the tumors are on my outside of skin

[@peachienickle]

Both my offspring have only a few on their outer skin level and internal level as well. I have it deep within my body only. Their mom, my wife, does not have it and she supports her family with great love.

[@ravindulakshan6527]

May I know if any medicine has been tried in the world to control or cure this disease? Can I hope for a cure? Can you hope for a medicine?🥺

[@tanyahanson-meier8571]

The Children's Tumor Foundation can let you know about the recent research and new drugs.

[@JemJam2976]

There is one medication out to help and "try" to control tumor growth

[@mikakaleesi4693]

This is something Genetic, and anything genetic can not be cured, but there are therapy to prevent the Tumor from developing

[@tanyahanson-meier8571]

It's not rare. It happens 1 in every 3,000 births by spontaneous mutation. My son has NF-1, too. It is the most common genetic disorder that you have never heard of . That's the NF Foundations slogan

[@MustyBastard]

its common cause idiots that have it keep on deciding to have children that they pass it on to. This people are horrible. It is your responsibility to not have children if you have this condition. If you are fully functional and not on disability, adopt . But don't bring more suffering into this world.

[@JemJam2976]

Which is ironic. It's common, but it's not. Mine was spontaneous. My daughter got it from me.

[@scoobik]

why does he look like a undercooked hotpocket

[@MustyBastard]

Every subsequent generation of NF gets worse. This is what these stupid broads don't seem to get. Life with be hell for this baby boy. He will spend his whole life alone.

[@michelletalbot2281]

Rage baiting? Coming on to a video with a young child with a hereditary condition that causes tumors and cancer and calling him unintelligent names? Smh bad look for you..also by the way while many cases of NF are genetic 50 percent are spontaneous..meaning your child can be born and draw the lucky straw to have this disorder and be the first known person to your knowledge in your family to have it. So maybe exercise some common sense and kindness toward this baby and others who share this disorder because u never know if your child or anyone u love can be born with it.

[@scoobik]

@@michelletalbot2281 what are you yippity yapping about yappersvilled called they want their mayor back

[@MustyBastard]

@@michelletalbot2281 Just more proof of how badly we are treated with this condition. There is no justice in this world