Mom Loses Two Babies to Cardiomyopathy, Inspires Research To Save Lives

Share
Copy

Heather Riley of Abilene, Texas, wonders if her son Casen might have been saved when he was diagnosed with HCM in 2009 and put on medications.

Born 10 weeks premature, Casen was diagnosed with Noonan syndrome and HCM. He died at 6 months old.

"He had two of the risk factors," said Riley, 31. "He was underweight and had a malformation syndrome. As parents, we were clueless and didn't know anything about cardiomyopathy. This study might have helped change the course of things."

Riley and her husband Casey, who runs a home improvement business, found resources from Yue's foundation to cope with their son's illness and later, after the baby's death, turned to CCF for support.

Each year they hold a fundraiser, "Casen's Crew," and donate $10,000 to $15,000 to CCF. They have since had another boy, Carter Casen.

"People live every day with cardiomyopathy and do fine," she said. "But some children, like Casen, are so much worse. I think the study will help others."

As for Yue, she now juggles her full-time foundation work with being a mother. She now has four children, aged 5 to 13, two of them adopted (the oldest from China and the youngest from Korea). Her two biological daughters are healthy, but continue to be medically screened, she said.

Doctors could never find a genetic mutation in their father, who takes medication, so genetic testing on the children has been impossible.

Yue's Tenafly-based foundation has grown from a one-woman operation to a staff of five.

"It's my personality. I just don't give up," said Yue.

"I realized CCF was so much bigger than just about Bryan and Kevin," she said. "It's about the kids who are diagnosed today and those who will be diagnosed tomorrow. CCF is their advocate, and together with other families, we will save more lives and improve outcomes for children living with cardiomyopathy."

In addition to advocating for families and legislation, CCF founded the first-ever tissue and blood sample repository and is also holding its third scientific conference in 2014.

"It's a testament to her strength," researcher Lipshultz said of Yue's success. "Most families want to do something, but their interest wanes. She is impatient and driven and she wants a cure yesterday."

Page
  • 1
  • |
  • 2
Join the Discussion
You are using an outdated version of Internet Explorer. Please click here to upgrade your browser in order to comment.
blog comments powered by Disqus
 
You Might Also Like...