CHATTANOOGA, Tenn. (AP) — Shafer Daves’ siblings — Shayli, 19, Sharayah, 17, Shanel, 15, and Shaw, 14 — have known for years that a day might come when they could each become their little brother’s life preserver.
Shafer, an 11-year-old Chattanooga boy and the youngest child of Jada and Kevin Daves, has a rare condition called Denys-Drash Syndrome that causes him to need a kidney transplant about every 10 years.
He is home-schooled and has a feeding tube to keep his kidneys hydrated, according to his mom, but he is otherwise a full-of-life 11-year-old.
In the summer of 2011, at age 20 months, Shafer received a life-saving kidney from his mother. But there were points in his infancy when doctors thought Shafer had only a few weeks to live. Aggressive cancer, which is often associated with the syndrome, was a constant fear. Only about 200 cases of the syndrome have been recorded in the world.
For a decade, some of Shafer’s older siblings have been thinking about what they would do when it came time for one of them to step forward to donate a kidney.
When they were still young children, his older siblings promised to be donor candidates when they reached the age of consent. They would line up to keep Shafer safe, they promised. And they have never wavered.
Actually, his sister Shayli, who was 9 at the time of Shafer’s first transplant, wanted to give him one of her kidneys in 2011.
“We gotta have Mom,” she told one of her brother’s doctors, not wanting to risk her mother’s life during the procedure. “Please take my kidney. I know Jesus.”
Well, the time has almost come for another donation and Shayli, a rising junior at Lee University now, is first in line to be tested. There is a 25% chance she will be a compatible donor, the doctors said. If she is not, another sister, Sharayah, who will turn 18 in October, has her hand up to be tested, as well.
“We have two siblings (of age) before we go outside the family,” said Shafer’s mother, Jada. “We feel confident that a sibling is going to be a donor.”
Shafer’s kidneys are now functioning at about 25% of normal, his mom said. When his kidney function dips to 15%, he will require dialysis, she said.
The Daves think that within a few months they will have to set the transplant process in motion. Lots of testing and counseling assistance goes into the arduous process.
In the meantime, the family recently marked the 10-year anniversary of Shafer’s first transplant with a back-to-school bowling party, which was also a fundraiser to assist with his medical expenses. The event raised almost $25,000, including $10,000 from a Middle Tennessee store owner who met Jada Daves when she was on a shopping trip to Franklin, Tennessee.
Jada said she recently met Christina Martin, owner of the Philanthropy clothing boutique in Franklin, and the two immediately formed a bond.
Martin, who blends her business and faith, would say later she felt led by God to help the family. She and her husband, Christopher Martin, give $50,000 or more a year from the store’s proceeds to charity, according to the Philanthropy website.
Shafer is an accomplished singer and was invited to sing the national anthem at the TSSAA basketball tournament in Middle Tennessee last year that was ultimately canceled by COVID-19.
“I tell people that the beauty that comes from parenting a sick child is that you see what it does for the other children,” said Jada, who has a doctorate from Vanderbilt University and operates an inspirational speaking and training firm. “Our children have become better because of Shafer.
“We tell our story because it gives encouragement to other families,” she said. “The community has showed us so much love and kindness and generosity. There’s so much craziness around, but the world is still spinning and it’s still a great place.”