Patient Family Archives - Advanced Cardiac Therapies Improving Outcomes Network

Defying the Odds: Riley’s Life with Duchenne

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.”

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Care Across State Lines: Ricky’s Journey to Life-Saving Surgery

Patient Stories, Stories

Ricky was diagnosed with Duchenne Muscular Dystrophy (DMD) within the first year of his life. With the unyielding support of his mother, Rosie, he has defied the odds of a complex disease. From diagnosis to treatment, and now recovery, Ricky goes everywhere, experiencing life to the fullest.

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From ACTION Patient to Summer Intern: Sam’s Story

Patient Stories, Stories

You may recognize her as our homepage cover girl on the actionlearningnetwork.org website, but now all grown up, Sam is pursuing a biology and pre-med undergrad degree at Miami University. She wants to become a cardiologist to be able to deliver the same quality care she receive as a patient.

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A New Heart, A New Community: Raylan’s Story

Patient Stories, Stories

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.

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Juliana is happy and healthy after her heart transplant.

Finding Heart — Juliana’s Story

Patient Stories, Stories

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.

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Finding Light in the Dark: Brynn’s Story

Patient Stories, Stories

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.

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