Ava Shepperd, 14, and John Ben Shepperd, 18, who suffer from cystinosis now have a new lease on life

By Char Adams
May 10, 2019 11:30 AM
Credit: Bob Owen/The San Antonio Express-News via AP

After Kim Azar and John Shepperd’s son and daughter were born with the same rare kidney disorder, the parents said that all they’d need is one donor to provide kidneys for both children. But they never thought it could actually happen. Until now.

Ava Shepperd, 14, and her brother John Ben Shepperd, 18, of Texas, both have cystinosis, a genetic disorder that can damage organs — particularly the eyes and kidneys — resulting in the need for transplants early in life, according to Good Morning America. As their health declined over the years, the siblings underwent dialysis and were added to the donor wait list for new kidneys.

Credit: Bob Owen/The San Antonio Express-News via AP

Then, last week, the family got the call they’d been waiting for. Ava and John Ben would be receiving kidneys from a single donor.

“We never in a million years would have guessed that they would be receiving kidneys on the same day at the same time,” Kim told the Rivard Report.

The parents called it “a miracle,” telling GMA that the operations on May 3 at University Hospital in San Antonio were successful. Ava lives with Kim in Alpine and John Ben with John in Austin, according to the Houston Chronicle.

“They’re doing great,” John said of his son on Wednesday. “John Ben was released yesterday and Ava was released about an hour ago. Now they have a chance to fly because they are not tethered to the dialysis life anymore.”

Credit: Bob Owen/The San Antonio Express-News via AP

John Ben was diagnosed with the illness when he was about a year old, and doctors told the family that he would likely only live for 10 years, the family recalled to GMA. Ava was diagnosed after her birth in 2005. John Ben spent at least a year on the transplant list and Ava spent about three months, according to the Report.

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

He added to GMA: “The biggest thing I want to come out of us telling our story is getting the word out there that organ donation is important.”

Dr. Greg Abrahamian, surgical director of the Center’s pediatric kidney transplant program, performed Ava’s procedure and told GMA that both kidneys “started working immediately.” He noted that the organs were likely given by an “adolescent donor.”

John and Kim said that they are grateful for the donor’s decision.

“Obviously if a person gives both kidneys they’re deceased,” John said. “I would show [the donor’s family] John Ben and Ava and say, ‘look, there is great good that came out of this.”

Ava added: “I’m really happy. I feel bad for the family, but I’m really grateful that they made the decision to save [another] life.”