RICHMOND, Va. — Rebekah Smith describes her 7-year-old son Jonah as adventurous and fearless, especially after everything he’s gone through.
“We weren't sure if he was ever going to walk. We weren't sure what his capabilities are, and he's overcome so much that we didn't think was possible for him,” Smith recalled.
Jonah was born with dislocated hips and the bones in his feet didn’t fully form. His doctors didn’t know how to treat his condition until Jonah’s parents connected with experts at the Children’s Hospital of Richmond at VCU.
“We've done so many different testing, everything came back normal. It wasn't until I met with the VCU genetics team that we really pushed for the big genetics testing to be done for him, and that's when we found out that he had a very rare gene mutation,” Smith explained.
Jonah was diagnosed with a rare form of Spinal Muscular Atrophy that impacts his lower body muscles and fine motor skills.
Smith credits experts like VCU pediatric orthopaedist Dr. Chester Sharps for helping Jonah walk independently, often without his leg braces.
Jonah has been selected as the 2025 Children’s Miracle Network ambassador and is starting the new year off with awareness about a weekend fundraiser.
On November 2 and 3, you can help fundraise for the Extra Life program of the Children's Miracle Network Hospitals.
The event brings game lovers together to play for a cause while raising funds for the Children’s Hospital of Richmond at VCU.
On Tuesday afternoon, Jonah was surprised with Marco’s Pizza and a gaming session inside the GameTruck Richmond.
Chef Marco was on hand to watch Jonah play his favorite video games while Smith shared how gaming helps her son heal.
“One thing I think really helps is that he does have a little bit of muscle wasting in his hands. The nice thing about video games is that you need a lot of hand-eye coordination. Jonah also has ADHD and video games help him focus,” she explained.
Children’s Hospital Foundation special events officer Vaughan Clark said participation goes beyond video games.
“It is an opportunity for gamers of all kinds to come together and game, whether it be online gaming, tabletop gaming, yard gaming, collegiate sports. You can even take it into crafting, really anything,” Clark said.
You’re encouraged to donate online at extra-life.organd make sure you designate the Children’s Hospital of Richmond at VCU as your beneficiary. That way your funds and dollars stay to help young patients in town.
The funds go to special programs like the new Child Life Zone at the Children’s Tower.
Participating Richmond-area Marco’s Pizza locations will also donate a percentage of their weekend sales to Extra Life.
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