Leslie Miller Memorial - Mighty Max
Donation protected
Leslie was taken far too soon from this world. She lived a vibrant, exciting life and believed in living life to the fullest. We are honored at the outpouring of support and offers of aid, including the offer to start a gofundme account for funeral expenses. Due to the nature of the accident, funeral costs are covered, so instead of donations for those costs, we have decided to ask for donations to Mighty Max on behalf of Leslie. She and I had been talking about Max and his family just last weekend and we were both feeling devastated for them. We are both from Fairview and still have connections there, so it would be incredibly meaningful to our family if you donate to this cause instead.
The words are incredibly difficult for our family to find at this time, but please know we appreciate the messages, thoughts and prayers.
Here is part of Max's story.
Spinal Muscular Atrophy (SMA) is a rare neuromuscular disease which leads to a progressive loss of muscle strength that affects the ability to walk, swallow and breathe. One in 10 000 children are born with the disease. In Type 2 SMA, children can sit but cannot walk on their own.
In Canada, Max has access to Spinraza, a prescription drug taken during Max’s entire lifetime that can increase survival and motor function. But Max’s best chance at being able to walk and live a long and healthy life depends on receiving a dose of Zolgensma - a one time, potentially life-changing treatment that is not approved or funded by Health Canada and likely administered in the United States. It costs $2.8 million CAD. Zolgensma replaces the faulty gene at the root of the disease instead of just building a workaround. It is the most expensive one-time dose therapy in the world and must be given prior to Max turning 2 - a timeline that likely falls somewhere between his actual birthday in January 2021 and his due date at the beginning of May.
Mighty Max Website
Mighty Max Website
Organizer and beneficiary
Amanda Hanna
Organizer
Tumbler Ridge, BC
Bowden Sych
Beneficiary
