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含羞草研究社檚 parents, father Gaganpreet and mother Harpreet, said on Monday that it含羞草研究社檚 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.
含羞草研究社淲e are very thankful to everybody,含羞草研究社� Gaganpreet told the Surrey Now-Leader. 含羞草研究社淚 don含羞草研究社檛 have words to thank everybody, but it was amazing that this happened. Sometimes I can含羞草研究社檛 believe that has happened, I am just very pleased and thankful to everybody.含羞草研究社�
Oh baby, what a birthday gift: Surrey parents react to $2.8M raised to help son with rare Spinal Muscular Atrophy (SMA).
含羞草研究社� Tom Zillich (@TomZillich)
Aryan含羞草研究社檚 birthday was celebrated Friday with a fundraising party held at a banquet hall in Surrey.
含羞草研究社淚t was very nice. We didn含羞草研究社檛 expect that, so it was a surprise,含羞草研究社� 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.
含羞草研究社淲e 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,含羞草研究社� recalled Gaganpreet.
含羞草研究社淪o 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含羞草研究社檚 been great since then.含羞草研究社�
Aryan has been getting treatment known as Spinraza, which has helped his condition, but Zolgensma is the more permanent 含羞草研究社� and expensive 含羞草研究社� fix.
含羞草研究社淚t含羞草研究社檚 a transplantation therapy,含羞草研究社� Gaganpreet explained. 含羞草研究社淎fter some time hopefully it will be making 100 per cent protein and he will be normal, a normal kid. We are very hopeful 含羞草研究社� it含羞草研究社檚 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.
含羞草研究社淚t 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含羞草研究社檚 not working on everybody the same. But we are hopeful and we are thinking positive that it will work 100 per cent on Aryan.含羞草研究社�
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.
含羞草研究社淎ryan含羞草研究社檚 name is in that process so we can import that drug from the U.S., and it will be held at B.C. Children含羞草研究社檚 (Hospital),含羞草研究社� the father said. 含羞草研究社淚 just emailed our neurologist and told them we are ready to go and we have the money now.
含羞草研究社淭hey 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.含羞草研究社�
tom.zillich@surreynowleader.com
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