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

Like us on Facebook Follow us on Instagram and follow Tom on Twitter

Healthcare and Medicine

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

B.C. salmon farms challenge activists’ demands for site closures

News reporting also unfair, inaccurate and distorted

Ladysmith man arrested in Saanich after towed sawmill draws attention

Police located the man thanks to social media and a keen-eyed witness

Killer whales cause a scene

WHALE OF A TALE Art Carlyle captured these images of killer whales… Continue reading

Ladysmith man shocked out of his seat after $50,000 Keno win

Larry Salmond plans to purchase a new RV with his winnings

Green Party pins Nanaimo-North Cowichan riding hopes on Istace

Leader Furstenau in town for the announcement of Chemainus businessman’s candidacy

105 new COVID-19 cases, 1 death as health officials urge B.C. to remember safety protocols

There are currently 1268 active cases, with 3,337 people under public health monitoring

U.S. Presidential Debate Takeaways: An acrid tone from the opening minute

Here are key takeaways from the first of three scheduled presidential debates before Election Day on Nov. 3

B.C. nurses report rise in depression, anxiety, exhaustion due to pandemic

A new UBC study looks into how the COVID-19 response has impacted frontline nurses

National child-care plan could help Canada rebound from COVID-induced economic crisis: prof

A $2 billion investment this year could help parents during second wave of pandemic

Search suspended for Indigenous elder last seen mushroom picking in northwest B.C.

Mushroom picker Thomas (Tommy) Dennis has been missing since Sept. 16

Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

16 MLAs retiring from B.C. politics add up to $20M in pensions: Taxpayers Federation

Taxpayers pay $4 for every dollar MLAs contribute to their pensions

‘Bonnie’ and ‘Henry’ among latest litter of service dog puppies

B.C. Alberta Guide Dogs names two pups after provincial health officer

B.C. VOTES 2020: Few solutions offered for ‘out of control’ camping

B.C. Liberals, NDP spend millions as problem keeps growing

Most Read