Donations, what's happening?
We would like to thank each and everyone of you who has helped our family with Max’s fight for Zolgensma. When we received the SMA diagnosis last November, as we were trying to understand what it meant to be an SMA family and how little time we had to raise $2.8 million dollars, it was the community that took over. We will be forever grateful in how, during a time we were all told to stay apart, this amazing community came together to support Max. There were so many fundraising initiatives Max’s community put together that not only raised money but every single time you shared Max’s story you were also advocating for him and other SMA families. It was the drive and determination from Max’s community that yielded the results for the government to fund Max’s Zolgensma.
As many of you know it's been almost two months since Max received his new genes. We’ve taken this time to pause and to spend time reflecting on the whirlwind of events that have happened since Max’s diagnosis. We know a lot of people have questions about the money that has been raised and because Max received funding it has left us with a lot of hard decisions to make. And these are decisions that we did not want to take lightly because of the outcry of community support. Although Zolgensma is the closest thing to a cure, it is still not a cure. There is so much uncertainty surrounding where Max’s disabilities and abilities will take him. While we are optimistic, we also need to be realistic as Max’s life will most likely involve extensive therapy and equipment. So if you choose not to want a refund we will be setting up a trust for Max so that a portion of the money fundraised will be able to be used for these things.
In addition, we are also looking to support our local community as they were essential in this fight. There are some local community initiatives that are close to our heart, and we are looking into putting a portion of the money towards making Fairview more accessible. We are currently exploring the idea of building an accessible park in the Town of Fairview so that the community can benefit first hand from the enormous support Max received. Lastly, we want to continue to show our support throughout the SMA community. We are unsure what exactly this will look like at this time as there are so many families who do not have the same access to Zolgensma that Max received; however we want to continue to show support in ways that we are able to. If any of these initiatives are not something that you want to see your money go towards you may request a refund. The how to’s will be posted on the "Refunds" tab. Please follow the instructions. We also have made it easy for those who donated on GoFundMe to request a refund. This information would have been emailed to you. If you are interested in donating directly to children in Canada who are fundraising for SMA they will also be posted on the website under "SMA Children in Need". Thank you again for all the love and support we have received. You helped Max move his first mountain of many! We are truly grateful for the community who is standing beside us!