Stories of NF: Noah C.

Noah was diagnosed with NF1 at 7 months old at Washington University, St. Louis Children’s Hospital, by Dr. Gutmann.

Living with NF has impacted our lives in several ways. Noah has a lot of doctor appointments, which seem to constantly keep our schedule full. Noah has pectus excavatum, low muscle tone, moderate/severe sensorineural hearing loss & a significant speech delay due to NF. He receives speech, occupational, & physical therapy as a result of his symptoms.

We have the highest of hopes for the future, we like to focus on the good and hope for the best. So, NF doesn’t impact any plans we have for the future, we will continue to live life to the fullest each and every day! We will remain proactive, to try and stay on top of any symptoms that may appear, but we will not live in fear of the possibilities!

Being involved with the NF community helps us stay motivated; connecting with others who truly know and understand NF, helps us stay strong. We love to attend CTF events and the NF Walks, it gives us the opportunity to learn more about NF and connect with others!

Noah loves speech therapy, it’s one of his favorite parts of the day; he gets very excited to go to “school” and see his speech therapist and friends. He is also in parkour, which is a great way for him to get some of that energy out, and believe me, he has an abundance of! Noah plays soccer too, and he loves it!

Noah is a very fun, loving, adventurous, outgoing, and healthy little boy, who lets nothing stand in his way of what he wants in life! My hope is that he carries this drive with him throughout life, to overcome any obstacles he may face. Being with family and friends makes Noah happy. He loves to run around and play outside! Just like most little kids his age, he loves the park and his power wheels. He’s a rough and tough little boy, who is always on the go!