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