Teenage siblings with rare genetic disease receive kidney transplants on the same day

Siblings underwent surgery at University Hospital

By Bill Barajas - Reporter

SAN ANTONIO - John and Ava Shepperd share a rare genetic kidney disease known as cystinosis that required the siblings to undergo a kidney transplant.

"It took me a few minutes to realize that they actually had a kidney for both me and my sister. It's a little crazy. It's kind of hard to believe because I feel like I had been waiting for so long," John said.

John, 18, and his sister, Ava, 14, received their transplants on the very same day, a first at University Hospital.

"It was kind of painful because they're cutting me open, but I'm really thankful for the kidney that I have and thankful to the donor," Ava said.

Cystinosis was tough on the Shepperds and forced them to undergo dialysis while they waited for a donor.

"Cystinosis is a genetic disease where the body cannot process one amino acid called cystine. It will build up in all the cells of the body and mainly affects the eyes and kidneys. It used to be a routinely fatal disease," said Daniel Gebhard, with pediatric critical care at University Hospital.

The Shepperds are now recovering and are expected to live normal lives, even though they will never be fully cured of the disease.

"That has been an amazing experience and an amazing testament to the importance of the kidney donation programs and organ donation programs," said John Shepperd, the siblings' father.

For more information on the pediatric kidney transplant program, click here.

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