On any given day, you may find Riley watching live sports in his home state of Montana. You may not know that Riley has been living with Duchenne Muscular Dystrophy since he was 3 years old. With his family’s fierce support, he’s lived wholeheartedly despite the challenges of his condition. From intensive heart transplant surgery to obtaining a college degree, Riley follows his mother Nina’s advice: that a “life is meant to be lived.”
We hope you are enjoying your summer vacations and finding time to soak up the longer sunnier days of the year with your families!
Looking ahead to the Fall, we are working with several committees to prepare new projects for launch. Some of these projects include a new Discharge Bundle for VAD patients and new interventions for the Fontan Referral project. We have also been working diligently to increase enrollment and data entry in our heart failure and muscular dystrophy registries. This critical data will help support the development of future projects. We appreciate everyone’s efforts throughout the busy summer to keep our important ACTION work moving along!
From the moment Raylan was born, he fought for his life. Born with cardiomyopathy, Raylan was placed on the transplant list at seven weeks old. His parents, Bonnie and Craig, could only sit and wait for answers about their baby. After agonizing challenges, numerous roadblocks, and more than a few long nights, Bonnie and Craig brought their baby home and found a new community along the way.
At 11 days old, Juliana waited for a new heart while her mother, Riki, fought breast cancer. Together as mother and daughter, they faced unexpected challenges, braved mounting treatments, endured long waits and recovery. Now, Riki shares their story in thanks to the community of support they found along the way.
One weekend, Jimmie noticed his 16-month-old daughter, Brynn, was breathing strangely. One week later, Brynn was heading into surgery to be placed on a VAD. For half a year, Jimmie and his wife, Kristyn, waited by the phone for the transplant call. The family had many long nights, learned how to navigate their lives with a VAD, and finally reached the end of a dark tunnel.