A note from Noah's family

Noah adores everything about Sesame Street. He loves books, horseback riding, puppets, music, being tickled, riding his bike (with lots of assistance) and going to school.  His favorite color is orange and he is a very proud big brother. Noah's speech is extremely limited but he will tell you about his little brother by pointing and saying "my baby buba!"  

Noah is a trickster and loves to explore. His laughter is the most amazing sound in the world, and he knows it.

Noah's diagnoses includes cerebellar atrophy, ataxia, spastic paraplegia, severe developmental delays, autism, chronic migraines, rapidly developing cateracts, asthma, and strabismus issues. Learning Noah has a progressive disease that might eventually take our little boy's life was beyond devastating.

After three years of regressions and misdiagnosis, we finally underwent Whole Genome Sequencing, a genetic test showing Noah's mutation in KIF1A. Finally an answer. Just after his third birthday Noah was diagnosed with a double mutation in the KIF1A gene and Spastic Paraplegia. Doctors told us that Noah was the seventh child in the US diagnosed with a mutation in KIF1A. Like all of the KIF1A families, we're hoping treatment is right around the corner.


Hometown: Belleville, Illinois

Age: 5 years old

Awesome big brother

Total ​Superhero

Every week a family member tells a story and shares a picture. 

 This week's KIF1A superhero is Noah!

Superhero of the Week