Alport Syndrome
Sixteen-year-old Tykwun Stewart loves sports—particularly basketball and auto racing. When he received his March 2013 kidney transplant he scored a big victory over the kidney disease that often sidelined him from his favorite activities. At around two years of age, Tykwun was diagnosed with Alport Syndrome, a genetic condition that causes kidney damage along with hearing and vision loss. “I would find blood when I changed his diaper. The doctors at Children’s did a kidney biopsy and that’s when they discovered he had Alport,” said his mother Kisha Williams. “He has hearing loss and has to wear hearing aids. We waited it out until he got to adolescence which is when Alport really begins affecting the kidneys. When he reached 14, his kidney function began going down,” Williams said. In November 2011, Tykwun began at-home dialysis to filter wastes from his blood, a job that his kidneys were no longer able to do. The Renal Care Center at Children's of Alabama is one of three pediatric programs that trains qualifying pediatric patients to perform hemodialysis at home using a NXSTAGE Portable Dialysis Machine. Although after complications from an infection, Tykwun and his mother began frequently making the hour drive from their home in Cottondale to visit Children’s for dialysis. After several months, Tykwun was placed on the waiting list for a kidney transplant. “He received his kidney on March 19, 2013 and he has done really well,” Williams said. Tykwun’s progress is monitored through weekly visits to the Transplant Clinic at Children’s. “As we get further out from the transplant we hope to cut that down to every couple of weeks,” Williams said. “Through all our visits and trips to Children’s, the nephrology doctors and nurses have made the whole experience really easy. They knew I was a working mother and they have tried to work around my schedule and make everything convenient for me,” Williams said. “They made me feel comfortable with some of the things that seemed impossible to me. They gave us a positive outlook on the situation,” she added. With his transplant behind him, Tykwun is looking forward to returning to a normal life. He is looking forward to finishing the school year at Holt High School with his friends after months of being homeschooled. Tykwun is also anxious to begin shooting hoops in the yard and going to auto races with his uncles and cousins this summer.
