Born in April 2020, Noah entered the world full of curiosity and light. He crawled at 8 months and took his first steps at 18 months — with assistance, and with the early signs of something that would only slowly reveal itself. Eating was difficult from the start. When he walked, it was unsteady. Running and jumping were beyond reach. Stairs were a challenge. Language came slowly.
By age 2, a clearer picture was emerging: unsteady gait, persistent muscle weakness, language delays, and ongoing eating difficulties. His family sought answers across specialists. On February 27, 2024, when Noah was 3 years old, those answers arrived — an SMA-PME diagnosis.
"Staff describe him as a cheerful and happy boy, well-liked by other children. He loves dinosaurs, cars, excavators, singing, and making people laugh."
At age 4, Noah cannot walk independently. He relies on assistive devices, experiences frequent falls, and requires breathing support, a feeding tube, orthotic shoes, and regular antibiotics to manage recurring lung infections. The list of equipment grows. His spirit does not shrink.
Noah is a boy who notices everything — a dinosaur in a picture book, the rumble of a passing excavator, a melody worth singing along to. His joy is not despite his circumstances. It is simply who he is. And it is exactly why this research cannot wait.
Begins crawling.
Walks with assistance; eating difficulties begin.
Unsteady gait, inability to run or jump, stair-climbing difficulties, language delays, and persistent eating challenges.
SMA-PME confirmed.
Cannot walk independently; relies on assistive devices, breathing support, feeding tube, orthotic shoes, and regular antibiotics for lung infections.
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