Vancouver Whitecaps FC are honoured to have Aaron as Kid Captain of the club's home match against LA Galaxy on Sunday.
Shortly after Aaron was born in September 2013, his parents Jerry and Rachel noticed that he was missing infant milestones and had abnormalities in his strength and motor skills. They took Aaron to a pediatrician who, after suspecting a genetic disorder called Spinal Muscular Atrophy (SMA), referred him to BC Children's Hospital (BCCH). After several tests, Aaron's diagnosis was confirmed.
SMA is a progressive disorder that affects the nervous system and muscles causing severe weakness and often taking away a child's ability to walk, swallow and ultimately, breathe. Aaron had Type 1 SMA, the most severe form of the disease, which has a life expectancy of two to three years.
There were no treatment options available at the time of Aaron's diagnosis and his health deteriorated over the next two years. Aaron required a feeding tube in his stomach due to not being able to swallow on his own. He was also put on a BiPAP machine to help him breathe during sleep and eventually lost his ability to sit upright.
Then, Aaron and his family were given new hope. Doctors told them about a promising drug being trialed called Spinraza which was believed to slow or stop the progression of weakness. Aaron began his Spinraza treatment in January of 2017 and after his first few doses injected into his spinal column, Aaron's conditioned improved dramatically. "It's been life-changing," said Rachel. "After the first dose, his arms and legs had more movement. Now, he's able to sit upright longer, breathe better and he's gaining strength every day."
Along with the ongoing treatment, Aaron also visits BCCH's Sunny Hill Health Centre for Children to receive specialized equipment that supports his development. Most recently, the team custom built a power wheelchair for him - equipment that Jerry says has transformed his son's life. "It's amazing. Before, he was always lying down and could barely see the world. Now he actually seeing everything."
Aaron, who is now five years old, is able attend school on a semi-regular basis thanks to his power chair. He continues to visit BCCH to receive maintenance treatment every four months and receives physical therapy in his community.
"We hope he'll be able to swallow on his own again, to taste different flavours, and that one day he'll no longer need the BiPAP machine," said Jerry. "That would be life-changing for him."
