Sandy Kendall is sharing the following update from her son-in-law regarding Lucy’s health journey:
YESTERDAY by Scott Van Doormaal
UPDATE!
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.
Now that we have had a moment to breath we want to share with you how Lucy is accessing this treatment. In an incredible turn of events, we found out Lucy was randomly selected by the drug company, Novartis/AveXis, to receive treatment through the managed access program.
This program is a world wide 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!
Right now we don’t know exactly what this means for the funds we have raised. (and probably won’t be able to make those decisions until Lucy has received 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.
We truly believe Lucy would not be receiving this treatment without the amazing support from all of you. 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
We are very hopeful for Lucy’s future and we can’t wait to share her miracles with you.
xo Vankendalls
