A mum's efforts to raise millions to save her ailing son came to an end after he died on New Year's Day. While she's grieving, some donors have asked her family for refunds.
14-month-old Rayyan Qush was diagnosed with spinal muscular atrophy — a genetic disorder that affects the motor neurons near the spinal cord controlling muscle movement — on Nov 6 last year.
His best hope for survival was dependent on a $3.1 million gene therapy drug called zolgensma, known to be the most expensive drug in the market.
It was a race against time as the drug had to be administered before Rayyan turned two. His mother Diana was given until April this year to raise the amount.
She began an online fundraising drive on Nov 12 and managed to raise a total of $1.1 million by the end of December.
However, Rayyan succumbed to his illness on Jan 1.
Barely 10 minutes after his family shared news of Rayyan's death across the fundraising platforms, a man started questioning the whereabouts of the donations on the Facebook page.
"It was so rude and insensitive. [Rayyan was] not even buried yet," Emilia, the cousin of Diana, told AsiaOne as she recalled the events that unfolded on the unfortunate day.
The 41-year-old said that she immediately deleted the comment and blocked him on Facebook, fearing that the bereaved mother would see it.
More at https://www.asiaone.com/singapore/s...rs-ask-mum-refunds-after-boy-genetic-disorder
