On May 3, 2019, 18 year-old John Ben Shepperd and his 14 year-old sister Ava were wheeled into two operating rooms at University Hospital where two surgical teams were ready to perform two kidney transplant surgeries. The two kidneys were coming from one donor.
A match from one donor to two siblings is “incredibly rare,” said Dr. Elizabeth Thomas, a surgeon with the University Health Transplant Center and associate clinical professor of surgery at UT Health San Antonio.
“Rare” is something Ava and John Ben know a lot about. They are among the roughly 500 people in the U.S. with a genetic kidney disease called cystinosis. It prevents the body from processing an amino acid and leaves a damaging effect on kidneys. They were both were placed on the national waiting list through University Health Transplant Center.
“We are honored by the trust they placed in us,” said Jennifer Milton, University Health Transplant Center administrative director. “Our team was determined to help them manage their health until they could receive donated kidneys.”
Waiting for a potentially lifesaving organ is a trying process. It comes with criteria to meet for blood type, antigen typing and cross matching. Then there are the human factors of long wait times, uncertainty and multiple medications to manage chronic disease in the meantime.
The Shepperd teens were at home in Alpine and Austin when they heard the news. The unfortunate death of a teen meant a renewed chance at life for them. The teen’s family generously agreed to organ donation, and the kidneys were a 92% match for them. The operations went well and the teens were home recovering within a week.
This is believed to be the first time in the world that one kidney donor was able to save siblings, so the Shepperd family found themselves featured on Good Morning America in June of 2019.
“The biggest thing I want to come out of us telling our story is getting the word out there that organ donation is important,” said John Ben. Milton could not agree more. “We are also incredibly grateful for their willingness to help raise awareness of the importance of organ donation on a national, even international, level,” she added.
Making a decision to donate an organ means helping somebody else who is often a complete stranger. It’s the essence of compassion, and a gesture that resonates strongly with the Shepperd family.
“The mom and dad, maybe both, had to make that decision together that their child was not going to make it, but they were going to donate his or her organs,” said John Ben’s and Ava’s father John. “I would show [the donor’s family] John Ben and Ava and say, ‘Look, there is great good that came out of this.’”