VANCOUVER (NEWS 1130) – A baby from Vancouver is getting a lot of support online from all around the world as she battles a rare genetic disorder.
A GoFundMe for two-month-old Lucy gathered hundreds of thousands of dollars, as the family attempts to raise the $3 million needed for treatment after Lucy was diagnosed with Spinal Muscular Atrophy.
Lucy was diagnosed with SMA type 1 in May, and the disorder reduces her ability to crawl, sit, or even swallow.
Lucy’s mother, Laura Van Doormal says since appealing to the public for help, the outpouring of support has left her and her family extremely grateful.
“The reception and support from the community have been outstanding and honestly really uplifting, morally and emotionally,” she says. “Financially it is getting us closer to our goal. People have reached out from all walks of life, donated what they could, donated their talents, even just the kind words and encouragement, it’s made a huge difference in our lives and given us a positive outlook for Lucy.”
She says all the donations are geared for getting Lucy to get treatment via a new gene therapy called Zolgensma, which would cost the family $3 million.
“Having support is huge and we know that raising $3 million is not something that we can do alone,” Van Doormal says. “So we acknowledge and appreciate every small donation and every kind gesture and we are relying on the community to help us and to help Lucy.”
And among the thousands of people who have donated, Van Doormal says celebrities have also reached out and pitched in.
“Olivia Wilde posted about Lucy and her story on her Instagram platform which was incredible, as well as influencers like Jillian Harris. Ryan Reynolds and Courteney Cox also donated,” she says. “It’s incredibly supportive and we appreciate they have a large reach and it’s kind and generous for them to use their platform and voice to amplify her story.”
Two other families with children who are also diagnosed with SMA type 1 have come out with their own struggles to raise $3 million as well, and have connected with the Van Doormal’s.
“We are fairly new to this, Lucy is only three months old but we have discovered this incredibly SMA community and it’s heartbreaking to be part of a community like this because it means there are more babies like Lucy that need support,” she says. “But everyone has been so kind and generous. Most of the people we met have been virtually but we have connected with families from all across Canada.”
-With files from Vanessa Doban