August 9, 2020 – From Scott Van Doormaal (Lucy’s Dad)
Happy Weekend – We have some big news to share…LUCY IS GETTING ZOLGENSMA!!
We don’t have a confirmed date but it will likely be early September. We will share more details soon. Right now our focus is preparing Lucy for the treatment.
We are so so so grateful for every ounce of energy everyone has poured into Lucy’s fundraiser and we hope you CELEBRATE with us!
Although this process has been extremely stressful and vulnerable for us, the support of this community has been uplifting and we’re thankful for all of your efforts. We hope you are as excited about this news as we are.
From Sandra Kendall
John and I have been so blessed with the support of the congregation, encouragement and assistance with this campaign. As well, from Scott and Laura, Sullivan, and LUCY thank you, thank you, thank you!
There will be more information to be shared, which we will pass along to the congregation as we find out!
Lucy is the 3 month old granddaughter of John and Sandra Kendal; members of Gale Presbyterian Church. She was born with a rare neuromuscular disorder that can be treated with a new gene therapy called Zolgensma. Unfortunately it is not approved in Canada yet, although approved in many other countries. It has life-saving effects and Lucy needs this treatment. The longer the wait, the more irreversible damage this neuromuscular disorder will have on her delicate newborn body.
Once we get approval for the therapy there will still be a cost $3 million! It is overwhelming to know that there is a drug that could change Lucy’s life but is prohibitively expensive. So we appeal to you to help us as we strive to help Lucy. We are hoping for hundreds and thousands of people to each give a small donation to Lucy’s GoFundMe page:
Please share the GoFundMe link and YouTube video and sign the petition for Zolgensma approval in Canada, found at: