It’s been quite the journey for parents Laura and Scott Van Doormaal as they’ve rallied with the world to save their baby’s life.
After raising over $2.4 million through a GoFundMe page and an undisclosed amount via supporters hosting private fundraisers for SMA treatment that costs $3 million, the parents have announced that their daughter Lucy has been randomly selected by the drug company AveXis, to receive treatment through its Managed Access Program (MAP).
“Thank you everyone for giving us space to sit with this new exciting reality that Lucy is getting the treatment she needs! I think we are still a bit in shock,” said the well Gryphon swimmers who now reside in Vancouver on the Life For Lucy Instagram page.
“This program is a worldwide lottery and although, like other parents we entered Lucy into it, we never expected her to be selected. Like I said we are in shock!”
The Van Doormaals did not immediately respond to requests for comment.
The global MAP program launched in 2020. It plans to distribute 100 doses of the $3 million drug Zolgensma this year free of charge to eligible patients with SMA who must be under two years old and a legal citizen of a country where health authorities have not yet approved the drug.
Zolgensma is not yet approved by Health Canada.
The couple disabled new donations to the fundraiser when it hit $2,471,380 on GoFundMe.
They said they intend to use the funds raised to support the SMA community but currently will likely not know how they will carry it out until Lucy receives treatment.
“That being said our goal and intention with the funds is to support the SMA community. If you have any specific questions regarding your donation, please reach out and we promise to keep you updated,” said the couple on their Lucy’s Instagram account.
The Van Doormaals said they truly believe that their baby wouldn’t be receiving the treatment without the support they received.
“Every personal story, kind message and fundraising effort gave us hope and strength to keep fighting for Lucy. We are so thankful for the awareness this has brought to SMA and are dedicated to continue to advocate for this community,” read the post.
“We are very hopeful for Lucy’s future and we can’t wait to share her miracles with you.”
