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

91ƵWe are very thankful to everybody,91Ƶ Aryan Deol91Ƶs father says
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Aryan Singh Deol with his father Gaganpreet Singh Deol and mother Harpreet Kaur Deol outside the family91Ƶs home in Surrey on Monday (Aug. 10). (Photo: Tom Zillich)

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.

Aryan91Ƶs parents, father Gaganpreet and mother Harpreet, said on Monday that it91Ƶs been a seven-month struggle for the Surrey family since their son was diagnosed with a type of , 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 has been reached.

91ƵWe are very thankful to everybody,91Ƶ Gaganpreet told the Surrey Now-Leader. 91ƵI don91Ƶt have words to thank everybody, but it was amazing that this happened. Sometimes I can91Ƶt believe that has happened, I am just very pleased and thankful to everybody.91Ƶ

Aryan91Ƶs birthday was celebrated Friday with a fundraising party held at a banquet hall in Surrey.

91ƵIt was very nice. We didn91Ƶt expect that, so it was a surprise,91Ƶ 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.

91ƵWe 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,91Ƶ recalled Gaganpreet.

91ƵSo 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 it91Ƶs been great since then.91Ƶ

Aryan has been getting treatment known as Spinraza, which has helped his condition, but Zolgensma is the more permanent 91Ƶ and expensive 91Ƶ fix.

91ƵIt91Ƶs a transplantation therapy,91Ƶ Gaganpreet explained. 91ƵAfter some time hopefully it will be making 100 per cent protein and he will be normal, a normal kid. We are very hopeful 91Ƶ it91Ƶs 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.

91ƵIt is approved in America and it has worked for other kids, but every kid is different right, so it works different on every kid, it91Ƶs not working on everybody the same. But we are hopeful and we are thinking positive that it will work 100 per cent on Aryan.91Ƶ

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.

91ƵAryan91Ƶs name is in that process so we can import that drug from the U.S., and it will be held at B.C. Children91Ƶs (Hospital),91Ƶ the father said. 91ƵI just emailed our neurologist and told them we are ready to go and we have the money now.

91ƵThey 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.91Ƶ



tom.zillich@surreynowleader.com

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Tom Zillich

About the Author: Tom Zillich

I cover entertainment, sports and news for Surrey Now-Leader and Black Press Media
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