Meet ASK Kid Riley
- 36 minutes ago
- 3 min read
For most 15-year-olds, life is about hanging out with friends, playing video games, and looking forward to the independence. For Riley, a vibrant teen who loves LEGO sets, Minecraft, and—most of all—swimming, that typical journey took an unexpected turn in March of 2025.
Riley was diagnosed with Ewing Sarcoma, a cancerous tumor located at the top of his tibia. For Riley, who has Down Syndrome, this diagnosis was exceptionally rare; his family learned there are only two documented cases in medical journals, making Riley a true pioneer and a case study for his medical team.
The diagnosis was a whirlwind, but the family wasn't facing cancer for the first time. Riley’s father, Will, had battled the disease three years prior.
"Watching him go through chemo and lose his hair was hard, but to see his daddy go through it and come out fine—I think that actually helped him," Riley’s mom, Beth, recalls.
The family leaned on each other for strength, forming what Riley dubbed the "Power Hero Family Alliance." In this alliance, everyone has a special color and strength; Riley gave himself the blue superpower of speed and his mom the pink power of love!
Treatment for Ewing Sarcoma is intensive. Riley’s journey included six rounds of chemotherapy, surgery to remove the tumor, and an additional eight rounds of chemotherapy.
Because the passage of time can be a difficult concept to grasp with Down Syndrome, Beth created a clever way for Riley to track his hospital stays using construction paper rings.
"He doesn't understand the passage of time day by day, but he was able to tear a ring off every day, and when he got to the last ring, he knew that was a day to get home."
ASK stepped in from the very beginning to "lighten the load" for the Power Hero Family Alliance.
While Riley was in the clinic, ASK staff like Katie would "swoop in" to distract Riley with games, giving his parents the vital space to discuss details with doctors. "That gave us time to react to what was being said and gather our wits before he had to see that," Beth remembers.
The support extended to every part of their journey, including financial assistance, easing some of the day-to-day stress. "The financial assistance was amazing and took a load off," Will shares.
"The utility payments, not having to worry about those... the cards for gas came in handy. The food gift cards really came into use, and the cafeteria vouchers really came in handy when we were in-patient."
ASK also ensured that Riley's community understood his journey. While they didn't need continual school assistance, ASK Education Support Navigator Jon Longenecker "went into our virtual classroom and did a presentation for his classmates so he could prepare his classmates for the change," his dad explains. Beyond the practical, ASK provided joy through inclusive events. "Everything ASK provided was accessible, and that was amazing," the family notes, recalling how Riley "stood 10 inches taller" in his suit at the ASK and Children’s Hospital of Richmond at VCU (CHoR) Prom. He also had a blast at the Annual ASK Holiday Party.
Throughout 14 rounds of chemo and surgery, Riley never lost his sense of humor or his love for hugs. The hard work reached a beautiful milestone in October 2025, when Riley finally got to ring the bell, seven months after his diagnosis.
Today, after his surgical wound finally cleared up, Riley is officially free to do what he loves most: swim! Riley and his family also plan on attending more ASK events where they can build relationships and friendships with other ASK families.
"I can't say enough good things about ASK," Beth says. "It's nice to know you are still family into the future!"
