Type 2 - Spinal Muscular Atrophy (SMA)

St. Louis Children’s Hospital

Tilly's Story

“Keep being active! Show what we can do for other people around the world.”  are mottos Tilly lives by. Diagnosed with Spinal Muscular Atrophy (SMA) Type II, Tilly is an advocate for people living with SMA.

Noticing her daughter wasn’t able to maintain a seated position on her own at eight months old, Leslie, Tilly’s mom became concerned.  As time went on, Tilly continued losing muscular strength. Over the next year, Tilly would visit St. Louis Children’s Hospital where multiple tests were run to pinpoint a diagnosis. At 18 months old, the family was told Tilly had SMA Type II.

SMA is a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles in our body. As an advocate for SMA, Tilly speaks in front of congress and other advocacy groups. She was a key component in helping Missouri become the first state to start screening newborns for SMA.

Tilly is an avid power soccer player. She plays on a traveling team with other kids in wheelchairs. Tilly is a passionate historian who loves to share facts about her favorite president, Abraham Lincoln. After she pursues a career in Neurology, Tilly plans on becoming President of the United States.

How CMN Funds help kids like Tilly

Tri My Best Adaptive Triathlon is an adaptive triathlon (swim/bike/run) for children and young adults with physical limitations. Encouraging physical fitness, the event focuses on those who would not typically bet able to participate in a traditional triathlon. Tilly has participated in Tri My Best Adaptive Triathlon since its inception in St. Louis in 2015.