Autumn finds hope at NIH and The Children's Inn for Neurofibromatosis Type 1

4 роки тому

Donate to support children like Autumn: bit.ly/2ShF6yf
Read more about Autumn and how your support of The Children’s Inn is making a big difference for her and NIH clinical research: childrensinn.org/a-proud-nih-...
Autumn is a vivacious 9-year-old with boundless energy and a big heart for people and animals. For the past seven years, the frequent Inn resident has also been an important partner in research for the National Cancer Institute.This April, Autumn’s clinical trial participation culminated in a major medical breakthrough: U.S. Food and Drug Administration approval of the first treatment for inoperable tumors caused by neurofibromatosis type 1 (NF1), an often devastating tumor predisposition disorder.

КОМЕНТАРІ: 13

@cleopatra1311 3 роки тому

I wish I had a place for my son to go to when he was little and or even now. He's 23 now, but it runs in our family so he really doesn't feel out of place. Aunt's uncle's and cousins have it. So far he hasn't been teased. My sister has it, she always came home with bruised knuckles from fighting LOL. She's the sweetest person one could ever meet , but she didn't take no crap when she was growing up. She saved my life when I was being murdered by a 24 year old drunk man. She was 15 and I was 11. She's one in a billion. I love her so! I love them all!!! OF COURSE ❣️💓😍, And you guys too! Stay Safe.

@meikajackson3765 4 роки тому

My daughter is 18 months old and she just got diagnosed with the same condition I'm new to this I been watching videos and reading up on it since I got the news

@autumnboykin6246 4 роки тому

I have it, I’m 18 now and honestly I forgot I even had it. I do some many school activity’s, I danced for 4 year and cheered for 4 year and it didn’t affect me at all. The only struggle I had was struggling in school. N1F1 cause ADHD and I had to work harder in school to make sure I stayed caught up. However I didn’t start seeing growth in my nodules and spots until I hit puberty witch was 4 years ago every since I haven’t seen a huge difference besides minor nodules that are small. I do become self conscious however I am greatful

@michelletalbot2281 16 днів тому

@@autumnboykin6246thank you for sharing this autumn. I am married and hope to have a family with a man who drew the 'lucky' straw being first in his family to have NF1. While we would love to be parents the concern is there that we may have a child with this condition and what that could mean Whether or not healthy and normal or has bumps andtumors obviously every child and person deserves love and respect but its nice to read about a young person who has the condition and with the exception of a few growths with puberty and adhd has had a very fulfilling happy childhood ❤ i hope ur still doing well

@kennetbojebendtsen5989 Рік тому

love there from denmark from someone who has nf1 himself end nf

@autumnboykin6246 3 роки тому

I’m Autumn and I have NF1 too

@uqj-jw1sq 3 роки тому

i have nf 1 also

@jesline8205 8 місяців тому

Me to nf1

@americanpatriotoutlaw1164 2 роки тому

I have NF1 myself I died three times when I was little Im 26 years old I wasn't supposed to live the doctor said when I turn 18 I was going to die but I prove them wrong the Lord is great he can heal us all God bless everyone who has it and who dont sorry if my writing is not that good I have mild learning disabilities as well I'm not ashamed of that either.

@Puhtayt0w 3 роки тому

I’m Maddie I’ve pleixform NF1 too

@amandaabraham879 2 роки тому

Hi Autumn I'm Amanda and I have NF1 Two I know how it feels

@valdetecarvalho3264 2 роки тому

Essa doença é muito difícil conviver com ela 😔 meu filho só conseguiu viver até os 23 anos pois aos 20 foi cada vez aumentando os tumores e comprometendo as articulações até que perdeu os movimentos ,a voz,e então não resistiu em 2020 muito sofrimento.