Trial drug helps ambitious Cary boy fight spinal disease

A newly-approved drug is helping a local boy get stronger and pursue his biggest dreams.

WRAL News first met Brady Chan six years ago, when a rare genetic disease called spinal muscular atrophy (SMA) threatened to shorten his life.

Brady was born with Type 2 SMA, a progressive genetic disease that weakens his voluntary muscles. In 2013, his mom, Mimi Chan, knew her only weapon against the boy's disease was therapy.

"His muscles just won't be able to keep up," she said. "And respiratory is a huge issue that we must continue to monitor throughout his life."

Now, at age eight, Brady is taking part in a trial for a spinal injection drug to target SMA. The FDA approved the drug, "Spinraza," in December 2016. Brady visits Boston Children's Hospital three times a year to get spinal injections of the new drug.

"It has definitely stopped the progression of the disease," said Mimi Chan. "He is getting stronger, despite the fact that he is getting taller and bigger."

Brady has a six-year-old brother named Lucas. Their mother said the two have a special bond. To practice his fine motor skills and raise money for other children with illnesses, Brady helps his mom with her home-based, online boutique. He uses toothpicks to paint earrings and cuff links.

Thirty-percent of the profits from the family's business, "Style Suite Minis," go toward non-profits like Miracle League, which helps children with special needs play baseball. Brady is also saving his money for a trained assistance dog.

"His name is going to be Winston," he said.

Brady still struggles with fine motor skills, and a wheelchair is still his only way of getting around, but he has high hopes.

"I hope [one day] I could maybe stand by myself or, maybe, with help," he said.