Champion: Jasper

The story of our hero began when he was just a baby and couldn’t do a lot of things other babies his age could, that and with some physical normalities for someone his size we went our local Children’s hospital and after a bunch of scary tests, and discovery that birthmarks were scientifically called cafe au lait spots, we left with a diagnosis of NF 1. He crawled, walked, and spoke past others and with assistance but we got there. Jasper hasn’t had a typical NF journey so far in that his current struggle is not with Fibromas or Optical Gliomas but more the other side effects of NF. He has serious sensory issues that impact an everyday way of life in the things he eats, listens to and feels, learning issues that are evolving in our first full-time school year and a lack of precious sleep that is needed to function at the correct percentage. Jasper is our hero for the fact with these everyday struggles he is till the most empathetic, loving, comedic little boy you might just ever meet.

3 more champs in

Ayden

Ayden was diagnosed at 8 months with NF and Pseudoarthrosis of the tibia. By 10 months her leg broke while in a brace. At the age of 3 we decided it would be best for her quality of life if […]

J J

My daughter was diagnosed with NF 1 when she was 5 years old. JJ is now 14. She has had 2 brain tumors removed and they are watching the 3rd. JJ was also diagnosed with epilepsy, ADD, has LD’ s, […]

Sawyer

My sweet 4 year old has NF1. He was diagnosed at 8 months due to the severity of his tibial displacia. Shriners Hospital performed a symes amputation (basically the foot and straightened the leg). He loves his prosthesis. He is […]

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