Fundraiser for sick baby surpasses goal
Savita Majhu is pinching herself after a series of magical connections led to an outpouring of support around the globe for a GoFundMe campaign she started to save the life of her beloved friends’ child.
“I’m still in disbelief,” said Majhu.
She had cried tears of anguish and disbelief on Jan. 29. She was with Harpreet and Gaganpreet Deol at B.C. Children’s Hospital when they received news their then-five-month-old son, Aryan, had Type-1 Spinal Muscular Atrophy, a severe degenerative disorder that affects the motor neurones of the spinal cord.
A treatment — Zolgensma — not yet approved in Canada, could save his life in a single dose, but is priced at almost $3 million and had to be administered before he turned two. It seemed impossible.
“His parents were so strong — they wanted to start fundraising right away,” said Majhu, who helped the couple start planning. Then COVID-19 hit. “We couldn’t have gatherings or events to raise money. It just all stopped.”
“We got to $40,000 and then we lost hope,” said Majhu.
Then Aryan got lucky. A Postmedia story in mid-July about Aryan captured the attention of Bollywood actress Neeru Bajwa, who shared it with her millions of social media followers, and donations exploded.
“A simple share makes such a difference,” said Majhu.
Bajwa’s fans and followers from around the world began donating, often in tiny amounts — $5 and a blessing, “Wahe Guru.” They spread the word on social media, and in person, from the Gurdwaras of Surrey to the Punjab.
“They would say, ‘This is all we have, but we will give again on our next paycheque,’” said Majhu. “It touched my heart, we were crying tears of joy.”
Now, said Majhu, the family wants to help others whose fundraisers for Zolgensma are languishing. “We have surpassed $3 million and we are going to donate any more money we raise to other kids who have SMA who are also fighting for Zolgensma.”
Without the treatment, 68 per cent of children with Type-1 SMA die before their second birthday and 82 per cent die before their fourth.
Majhu, a Vancouver paralegal, also plans to become an advocate. “I will be fighting to bring the drug here to kids in Canada,” she said.
GoFundMe has created a centralized hub for Canadian infants with Type-1 SMA, and Aryan’s family is already advocating among their supporters to direct donations to help other infants such as Harper Hanki, of Alberta, whose fundraiser is still nearly $2.6 million short of its goal — about where Aryan’s was two weeks ago.
On Sunday, Majhu and the Deol family gathered to share a blessing with the community and celebrate at the Gurdwara Sahib Dasmesh Darbar in Surrey.