Thomas the Train fan, Dumbo ride enthusiast
“I can’t believe how many lives he touched in his 2-and-a-half years,” says Riley’s proud mom, Christine.
Riley was diagnosed with an extremely complicated set of congenital heart defects before he was born. Christine and her husband, Rolly, were told that Riley may not live more than 30 minutes after birth, but they held out hope when they heard that the team at the Moore Children’s Heart Center at Lucile Packard Children’s Hospital Stanford would take on Riley’s case.
Riley was born in Orange County at 31 weeks, weighing 3 pounds. At 14 days old, he was airlifted to Packard Children’s Hospital, where he would undergo his first open-heart surgery.
“For the next six months, Packard Children’s Hospital and Ronald McDonald House Stanford became our home,” Christine says. “When we were able to bring Riley home, Jessica Cannon, NP, became our nurse through the hospital’s home monitoring program. I always looked forward to checking in with her. She helped me so much as a first-time mom!”
Riley spent time in Orange County and then returned for two more open-heart surgeries in 2017, which Christine said improved his quality of life tremendously.
After those surgeries, Christine, Rolly, and Riley the next year soaking in as much time together as they could. Riley had frequent doctors’ visits, but he and his dad would make stops at Disneyland on their way home multiple times a week. Riley adored the Dumbo ride, and no visit was complete without a spin on a flying elephant.
“That was the best year of his life,” Christine recalls fondly. “We went to Disneyland, Legoland, and Sea World.”
In addition to Dumbo, Riley loved Thomas the Train and had a chance to get up close to a locomotive decorated like Thomas.
Riley’s complex heart condition required more surgeries to give him the best quality of life, and he and his family returned to our hospital in 2019 for a procedure. Sadly, complications from Riley’s condition and the surgery were too much.
“He gained his wings,” Christine says, reflecting on her deep faith and belief that Riley is now in a place where he is not limited by his heart condition. She says that she is profoundly grateful to her social worker, Ellen Zemarkowitz, LCSW, for being there for her family during an incredibly difficult experience.
“No words can explain how much she means to us,” Christine says. “She was there for us from day one all the way to today, four years later. She will be part of our lives forever.”
After Riley’s passing, Ellen connected Christine and Rolly with our Family Guidance and Bereavement Program. The program offers support to families through counseling, resources, and events like the annual Day of Remembrance, where Christine and Rolly shared photos of Riley.
Riley’s journey inspired Rolly to pursue a career as a respiratory therapist. Today, he shares Riley’s story to inspire his colleagues and looks at his work through two lenses: what it’s like to be a patient and a care provider.
“The Family Guidance and Bereavement Team always touches base, letting us know that Riley is not forgotten,” Christine says. “That is our greatest fear—that people will forget about Riley—but he had an impact on so many people. It’s amazing.”
Christine, Rolly, and Riley’s 2-year-old sister Cydney will be Scampering in memory of Riley this year, and we invite you to join them on June 25. The Family Guidance and Bereavement Program is funded entirely by philanthropy, so every dollar you give to the program through Summer Scamper provides comfort to families like Riley’s. Thank you!