Boy continues struggle against rare genetic disorder
Posted July 24, 2013
Cary, N.C. — Last fall, Brady Chan had mastered the wheelchair made by his grandfather.
He has SMA – or spinal muscular atrophy – a genetic and progressive disease that slowly weakens the voluntary muscles of the body.
Now, at age 3, Brady has outgrown his old chair.
“Since then, we've got a powered wheelchair which he loves whizzing about the neighborhood, and we just got our modified van as well,” said his mother, Mimi Chan.
Brady has type 2 SMA. With type 1, children typically die before age 2.
Brady could live past adolescence, perhaps even into his 30s. Regular occupational and physical therapy can help him maintain muscle strength.
“We've been able to keep his head control strong. His arms are really strong,” said Jenny Credle, owner of Dynamic Therapy, which provides physical therapy for Brady.
“Inevitably, he will lose strength as he starts gaining weight, growing taller. His muscles just won't be able to keep up,” Mimi Chan said. “And respiratory is a huge issue that we must continue to monitor throughout his life.”
Still, Brady is a happy child who looks forward to his sessions, as do his therapists.
“Well, Brady is a very smart child,” Credle said. “His intelligence is through the roof.”
He's got plenty to look forward to, including giving up his "only child" status.
“He's having a brother this fall,” Mimi Chan said. “We're very excited for him.”
Chan and her husband are both carriers of SMA, so there's a 1 in 4 chance of their baby having the disease. However, the baby has already been tested in the womb, and he does not have SMA nor is he a genetic carrier.