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Release of Likeness

“We are truly grateful for all the donors who gave blood and helped sustain the lives of of our daughters Madi and Sydney. We will always be willing donors in the hope that we can help others.” —Linsey and Noel Rippy

Most families don’t expect to be faced with the prospect of losing their young child to a failing heart. For the Rippy family, that agonizing experience has happened not once, but twice.

Madison was first. At age two, she suffered a series of small strokes and was diagnosed with Dilated Cardiomyopathy (DCM). Her heart was the size of a softball—twice the size it should be. Her family rode the “Madi-coaster” up and down for nearly a year until a compatible heart was found, and even after the transplant operation, Madi’s journey was not over. She experienced right-sided heart failure and spent several harrowing days in the Cardiovascular Intensive Care Unit (CVICU) on extracorporeal membrane oxygenation (ECMO) that provided both heart and lung function support. She also received multiple transfusions of red blood cells, plasma, and platelets before her new lease on life stabilized.

Just three years after Madi’s heart transplant, her younger sister, Sydney, began a journey down the same road. Frightening episodes of tachycardia, blood clots in her leg, and cardiac arrest put the Rippy family in constant fear that they would lose Sydney before a compatible heart was found. Fortunately, Sydney held out long enough and received her transplant, following in her big sister’s footsteps.

Though the girls were matched with heart donors and successfully received transplants, their family takes life day by day.

“There’s a high likelihood that childhood transplant recipients will need future transfusions and transplants, so we are always monitoring the girls to see if that need has come,” said the girls’ mom Linsey. “And we know that their future needs mean they’ll require donated blood.”

And the Rippy girls have faced those ongoing needs. Seven years after her heart transplant, Madi came down with pneumonia and developed a blood clot. She had several blood transfusions at Children’s Hospitals in Minneapolis before transferring to the Mayo Clinic where she had a pacemaker implanted.

“Many people think transplants are a one-and-done deal, but they’re not,” Linsey said. “That’s why we’re so dedicated to education. If we can change one person’s mind about organ donation and get them to donate blood, we feel we’re meeting our obligation.”

The Rippys are now working with the Mayo Clinic as part of a study on Dilated Cardiomyopathy. Their participation in the study resulted in the discovery of a recessive genetic mutation for the girls’ condition. Their harrowing experience has paved the way for education and understanding.

The Rippys holds two blood drives per year with Memorial Blood Centers in honor of their girls. They do this both to educate friends and family about the ongoing needs of transplant recipients, and to give back to the community, because they have first-hand experience with the life-saving need for blood.