Stories of NF: Noah O.

Noah was officially diagnosed with NF1 when he was nine months old. We always said that we would not let NF1 define who Noah is as a person. Noah has Congenital Pseudarthrosis of the Tibia, which broke and also shattered his fibia and his tibia. There are no signs of it healing and it has been getting progressively worse as time goes on. Noah has already had two emergency surgeries on his leg and now has a transplant surgery coming up where they will remove the diseased bone and replace it with a bone donor’s bone.

At two years old this is a lot to take in, but Noah has never let this bring him down. He is a happy-go-lucky two year old who has taught himself how to walk on his leg and will continue to reteach himself how to walk after every future surgery.

We are a strong family who will always fight and advocate for our little man. We have brought some awareness to NF1 by making schools and childcare centres in our small town aware of NF1 and the challenges that these children face each day. We have had the schools and childcare centre children all wearing green and blue in May to show love and support for Noah and his condition.

Noah loves anything Paw Patrol or PJ Masks. He loves to play outside with bubbles, cars trucks and sand. He loves dancing and listening to the Wiggles.

-Noah’s mom, Bec