His Story

Noah

Full of wonder

Born April 2020
Diagnosis February 27, 2024

A cheerful spirit in the face of the impossible

Born in April 2020, Noah was diagnosed with SMA-PME on February 27, 2024 at just 3 years old. Despite everything that has followed, his joy remains undiminished.

Noah initially crawled at 8 months and walked at 1.5 years — though he needed a hand to hold and struggled with eating. At age 2, unmistakable symptoms emerged: an unsteady gait, inability to run or jump, stair-climbing difficulties, language delays, and persistent eating challenges.

Today at age 4, Noah demonstrates improving language skills but cannot walk independently and relies on assistive devices. He experiences frequent falls, increasing fatigue, progressive muscle weakness, and requires breathing devices, a feeding tube, orthotic shoes, and regular antibiotic treatments to manage lung infections.

Despite all of this, Noah maintains a remarkably positive outlook. He loves playing with dinosaurs, cars, and excavators, and delights in singing and making people laugh. Staff who care for him describe him as "a cheerful and happy boy, well-liked by other children." In the midst of his medical journey, Noah is simply — joyfully — himself.

"A cheerful and happy boy, well-liked by other children — he loves to play and sing and fool around."

Noah's Timeline
8 Months
Begins crawling
18 Months
Walks, with assistance; eating difficulties begin
Age 2 — 2022
Unsteady gait, inability to run or jump, language delays
February 27, 2024 — Diagnosis
SMA-PME confirmed at age 3
Age 4 — 2024–25
Assistive devices; breathing support; feeding tube; orthotics
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For Noah.
For every child like him.

Noah's story is one of ten in our global community — each a reminder of why SMA-PME research cannot wait. Your support funds the science that could change everything for children living with this devastating disease.