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

Mission poker player missing in Nevada is found alive and safe

Brad Booth went missing in July 13, found in mid September

Last day of summer should be pleasant across the Fraser Valley

With fresh air, some sunshine in the forecast nothing to complain about as fall arrives tomorrow

Abbotsford parents upset as district gets cohort exemption to maximize class sizes at elementary school

Classes and cohorts shuffled after division eliminated at King Traditional elementary school

Young Abbotsford cancer survivor rides 105-km with Terry Fox’s brother

Jacob Bredenhof and Darrell Fox’s cycling trek raises almost $90,000 for cancer research

Abbotsford’s Chase Claypool catches first NFL touchdown pass

Abby Senior grad established new record for longest scrimmage TD by a Canadian

Quirky Canadian comedy ‘Schitt’s Creek’ takes Emmys by storm with comedy sweep

Toronto-raised Daniel Levy and Ottawa-born Annie Murphy both got supporting actor nods

B.C. unveils new cannabis sales programs to help small, Indigenous growers

Government did not say how it will define small producers, but says nurseries will be included in the policy

B.C. transportation minister will not seek re-election

Claire Trevena has held the position since 2017

VIDEO: Shots fired outside Langley gas station that was scene of 2018 homicide

No reports of injuries in Saturday evening incident

B.C. migrant, undocumented workers rally for permanent residency program

Rally is part of the Amnesty for Undocumented Workers Campaign led by the Migrant Workers Centre

Preparations underway for pandemic election in Saskatchewan and maybe B.C.

Administrators in B.C. and around the country are also looking to expand voting by mail during the pandemic

Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Nearly 20 per cent of COVID-19 infections among health-care workers by late July

WHO acknowledged the possibility that COVID-19 might be spread in the air under certain conditions

Most Read