Aryan Singh Deol with his father Gaganpreet Singh Deol and mother Harpreet Kaur Deol outside the family’s home in Surrey on Monday (Aug. 10). (Photo: Tom Zillich)

Oh baby, what a birthday gift: $2.8M raised to help B.C. boy with rare disease

‘We are very thankful to everybody,’ Aryan Deol’s father says

As birthday gifts go, this one is pretty special.

Aryan Singh Deol celebrated his first birthday on Friday (Aug. 7), and on Saturday his parents learned that an online fundraiser has collected the $2.8 million needed for medical treatment to help him live a normal life.

Aryan’s parents, father Gaganpreet and mother Harpreet, said on Monday that it’s been a seven-month struggle for the Surrey family since their son was diagnosed with a type of Spinal Muscular Atrophy (SMA), a rare genetic disease that affects the central nervous system and voluntary muscle movement.

In March, just as the COVID-19 pandemic hit, friends and family rallied around the Deols to launch a GoFundMe campaign that aimed to raise a whopping $2.8 million to pay for a treatment called Zolgensma.

Now, the goal to help “Aryan’s Fight Against SMA” has been reached.

“We are very thankful to everybody,” Gaganpreet told the Surrey Now-Leader. “I don’t have words to thank everybody, but it was amazing that this happened. Sometimes I can’t believe that has happened, I am just very pleased and thankful to everybody.”

Aryan’s birthday was celebrated Friday with a fundraising party held at a banquet hall in Surrey.

“It was very nice. We didn’t expect that, so it was a surprise,” said Gaganpreet, a truck driver who moved with Harpreet from Vancouver to Surrey about two years ago.

Aryan was diagnosed with SMA last January, after his parents noticed his decreased movement.

Not long after the online fundraiser was launched, the Deols learned about a Vancouver-area baby named Lucy who was also diagnosed with SMA.

“We heard about Lucy in July and saw the news, that they raised more than $1 million in a few weeks, so we talked to them and asked how that happened, how they got on the news like that,” recalled Gaganpreet.

“So we started reaching out to the news channels, TV news, and then the Bollywood star, Neeru Bajwa, shared our post and people started to know what was happening. We did so many interviews, talk shows, and luckily we raised the money. I think we were at $40,000 on July 13, and it’s been great since then.”

Aryan has been getting treatment known as Spinraza, which has helped his condition, but Zolgensma is the more permanent – and expensive – fix.

“It’s a transplantation therapy,” Gaganpreet explained. “After some time hopefully it will be making 100 per cent protein and he will be normal, a normal kid. We are very hopeful – it’s a new treatment but we are very hopeful, after talking to other families in America and hearing what they say about it, and watching the videos and stuff like that.

“It is approved in America and it has worked for other kids, but every kid is different right, so it works different on every kid, it’s not working on everybody the same. But we are hopeful and we are thinking positive that it will work 100 per cent on Aryan.”

Now that the fundraising goal has been met, Aryan will be able to get Zolgensma through a program that gives access to such treatments to Canadians who have a life-threatening disease, Gaganpreet said.

“Aryan’s name is in that process so we can import that drug from the U.S., and it will be held at B.C. Children’s (Hospital),” the father said. “I just emailed our neurologist and told them we are ready to go and we have the money now.

“They will touch base and start the procedure from their side and they say maybe roughly a month, a month a half-long procedure for that. It will take a little while yet.”



tom.zillich@surreynowleader.com

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