Bus operator helps to raise $3 million dollars for child with a rare genetic disease

Bus operator helps to raise $3 million dollars for child with a rare genetic disease

When Davinder Kaura joined Coast Mountain Bus Company (CMBC) as a bus operator in September 2019, he was thrilled, looking forward to meeting his new coworkers. Little did he know how much their generosity would come to mean to him.

Supporting Aryan

Soon after Davinder’s 14-month old nephew Ayran was born, doctors shared some distressing news with the young boy’s family.

“When Aryan was only five months old,” says Davinder, “we found out he has Spinal Muscular Atrophy (SMA) type 1, which is a rare, genetic disorder that causes severe muscle weakness. Of the four types of SMA, Type 1 is the most severe.”

Unfortunately, treatment options for Aryan were limited.

“The only treatment available is in the United States and the cost is $2.9 million CAD,” explains Davinder.

Zolgensma, a medication that is used for the treatment of children under two years of age, is considered to be the priciest medicine in the world.

Davinder says he and his family contacted the provincial government and asked for support. Unfortunately, the family was told funding couldn’t be provided because treatment for the disorder wasn’t yet approved in Canada.

“We started to raise funds among friends and family in March,” says Davinder, “but we didn’t get a good response. So, we tried again a few months later and approached businesses. I also approached some of our depots (in Surrey, Vancouver and the Hamilton location in Richmond) for support.”

Davinder says he spoke with the operators at those locations and received a positive response: “Everyone wanted to help and share the story.”

In August, thanks to the support Davinder and his family received, enough money was raised for treatment. “From a combination of funds received from his colleagues and outside sources, we raised $3 million!”

Treatment and words of appreciation from Davinder

Davinder says things are looking up for his nephew.

He says, “Because of COVID-19, Aryan can’t go to the U.S. for treatment, so it has been arranged for him to receive treatment here at B.C. Children’s Hospital.”

On Wednesday, September 30, Aryan received his first treatment and his doctors say he will see improvements in the coming months.”​”

Davinder doesn’t know what he and his family would’ve done without the support and generosity of his colleagues and the community and are especially grateful as they know this year has been a challenging time for all.

“A huge thanks to everyone who supported Aryan in this journey and shared his story with others,” says Davinder. “It wouldn’t have been pos​sible without everyone’s support. We can’t wait to see what the future holds for Aryan.”