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)

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

Provincial health officer Dr. Bonnie Henry updates B.C.’s COVID-19 situation at the legislature, Jan. 11, 2021. (B.C. government)
Vancouver Island smashes COVID-19 high: 47 new cases in a day

Blowing past previous records, Vancouver Island is not matching B.C.s downward trend

Environment Canada is forecasting snow for the east Vancouver Island region the weekend of Jan. 23. (Black Press file)
Up to 15 cm of snow forecast for Ladysmith area this weekend

Snow to begin Saturday night, according to Environment Canada

The Ladysmith Health Care Auxiliary donated $23,044 to Ladysmith Seconday School. From left to right: Steffen Toxopeus, Larry Shaw, Dave Travers, and Duck Paterson. (Cole Schisler photo)
Ladysmith Health Care Auxiliary donates $23,044 to support health of LSS students

The money will go towards funding the Hunger Bites program and purchase emergency supplies

(File photo)
LETTERS: Responses to Pateron’s Perspective

Jacqueline Leitch-Murphy, and Richard Tarnoff respond to Duck Paterson’s column

The RCMP are reminding drivers to find alternative ways home if they have consumed anything that impairs their ability to drive. (Black Press file photo)
Impaired Ladysmith driver flees road check twice on the same night

The officer issued the driver numerous violation tickets, and a four-month driving suspension

Businesses continue to struggle under COVID-19 restrictions as the pandemic reaches the one-year mark. (B.C. government)
Another 564 COVID-19 cases, mass vaccine plan coming Friday

15 more deaths, community cluster declared in Williams Lake

A specialized RCMP team is investigating a suspicious trailer, which might have connections to the illicit drug trade, found abandoned outside a Cache Creek motel. (Photo credit: <em>Journal</em> files)
Police probe U-Haul trailer linked to illicit drugs left outside Cache Creek motel

Hazardous materials found inside believed to be consistent with the production of illicit drugs

Premier John Horgan leaves the podium following his first press conference of the year as he comments on various questions from the media in the Press Gallery at B.C. Legislature in Victoria, B.C., on Monday, January 13, 2020. THE CANADIAN PRESS/Chad Hipolito
Interprovincial travel restrictions a no-go, Horgan says after reviewing legal options

The B.C. NDP government sought legal advice as concerns of travel continue

The cost of potentially counting deer regionwide was among the issues that prompted Capital Regional District committee members to vote against pursuing a greater CRD role in deer management. (Black Press Media file photo)
Expanded deer management a non-starter for Greater Victoria

Capital Regional District committee maintains current level of support

Gem Lake Top, at Big White Ski Resort, seen at Jan. 8. (Big White Ski Resort)
Big White cancels $7.3M in lift tickets, accommodations due to COVID-19 orders

Since November, the ski resort has been forced to make several changes

Darlene Curylo scratched a $3M ticket, BCLC’s largest ever scratch and win prize. (BCLC)
Kelowna woman in shock after winning BCLC’s largest-ever instant-ticket prize

Darlene Curylo couldn’t believe her eyes when she saw the amount of money she’d won from a scratch ticket

While each person has different reasons for becoming homeless, a UBCO study shows they learn through their interactions with different services to perform ‘as homeless’ based on the expectations of service providers. (Contributed)
Kelowna homeless forced to ‘perform’ for resources, says UBCO study

One participant in the study said ‘It is about looking homeless, but not too homeless’

Aquaculture employee from Vancouver Island, Michelle, poses with a comment that she received on social media. Facebook group Women in Canadian Salmon Farming started an online campaign #enoughisenough to highlight the harassment they were facing online after debates about Discovery Islands fish farms intensified on social media. (Submitted photo)
Female aquaculture employees report online bullying, say divisive debate has turned sexist

Vancouver Island’s female aquaculture employees start #enoughisenough to address misogynistic comments aimed at them

Mowi Canada West’s Sheep Pass salmon farm, the company’s final B.C. operation to receive certification from the Aquaculture Steward Council. The Canadian Federation of Agriculture (CFA) is questioning a government decision to phase out salmon farms in the Discovery Islands. (Photo supplied by Mowi Canada West)
Canadian Federation of Agriculture backs B.C. salmon farmers

Letter to prime minister calls for federal “champion” for aquaculture growth

Most Read