Noah

Updated: January 13, 2025

A cheerful and happy boy, well-liked by other children

Born: April 2020

As a child: 

• Crawled from 8 months of age
• Walked from 1.5 years, but never let go and needed a hand to hold on to 
• Sometimes struggled to eat

First symptoms: 2 years of age

• Unsteady walk
• Couldn’t run or jump
• A challenge to climb stairs
• Lagged behind with language 
• Ate food more easily for a period before it got worse 

Noah was diagnosed with SMA-PME on February 27, 2024, when he was not even four years old.

At 4 years of age: 

• Better with language 
• Cannot walk independently, uses assistive devices 
• Falls more often 
• More tired and needs breaks
• Increased muscle weakness
• Needs help with mucus problems, has several breathing devices 
• Challenges with eating, being fed via a tube in his nose
• Uses orthotics in shoes because he steps incorrectly
• Frequent lung infections and antibiotic treatments 

Noah loves to play with everything from dinosaurs to cars and excavators, as other children his age do.  He has a wonderful ability to be positive and is happy and excited about the help he has received.  Noah loves to play and sing and fool around.