NF Stories

Jackson – A Face of NF

Hi! My name is Jackson and I’m 10 years old!! I was diagnosed with NF1 at 18 months old. It’s been a wild ride for me and my family, but I couldn’t be a happier boy!! So far I’ve been faced with failure-to-thrive (I eat through a g-tube in my stomach), global development delays, ADHD, autism, excessive growth hormone, optic nerve glioma, plexiform neurofibromas [on my spine] and scoliosis. Just last month I had spinal fusion surgery to help fix my spine. I also have MRIs every six months, medications and several specialists that help me a lot! But having neurofibromatosis hasn’t slowed me down one bit. I love to swim and play outside. I’m almost always silly and like to make people laugh. I have a lot of people in my family and community that love me a lot! They’re always there to support me and my family just when we need them. Thank you for sharing my story!

– Jackson

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