Rexford’s Story

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Rexford’s journey began on March 21, 2018.  He collapsed during gym class and was subsequently taken to the children’s ER at University of Michigan C.S. Mott Children’s Hospital.  After several hours of testing, waiting, and worrying, we received the devastating diagnosis – restrictive cardiomyopathy.  His heart was described as “stiff”, meaning it squeezes OK, but does not relax.  There is no cure, and his health will continue to decline.  The only treatment is a heart transplant.  In August, after additional testing, our doctors decided it was time to move him up on the waiting list.

After 100 days on the waiting list, we got “the call”. There was a match for Rexford and he received his gift on November 24, 2018.  After a scary 11 days in the hospital, Rexford was ready to go home and start his new life with his new heart. Immunosuppression drugs, steroids and blood pressure drugs are a lot to get used to but Rexford’s body is adjusting and we pray his new heart gives him many years of love and happiness. And we pray for our donor and the family that gave Rexford the most selfless gift. You are forever a part of our family.

While great strides have been made in preventing rejection in transplantation, there are still many complications associated with transplanted hearts.  The primary concern is Transplant Coronary Artery Disease, which is one of the leading causes of failure in transplanted hearts.  Our cardiology team currently estimates 12-15 years as the average time to failure.  While this is a scary statistic, we know that with the right effort, we can turn this 12-15 yr average into 25-30 yrs or hopefully into a Heart for Life.

Funding Pediatric Heart Transplant Research

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