DMD is a devastating disease that will slowly destroy all of the muscles in Max's body. DMD will put him in a wheelchair around the age of 12 and most boys do not live beyond their twenties. DMD currently has no cure - although there are promising treatments being developed and we have recently gained access to one - Translarna from the company PTC , via Health Canada's Special Access Program.
Translarna has been part of clinical trials in several countries and the results seem to slow the progression of the particular type of DMD that Max has.
Translarna has been approved in parts of Europe and is currently undergoing the review process in Canada. Thanks to Max's doctor he is now receiving the drug and we are very grateful for this opportunity to buy him some time.
Unfortunately, the drug is currently not covered by insurance or government funding, so we are forced to bear the significant cost of his treatment as we cannot wait for the months and/or years the approval process may take. This is time, that sadly, we do not have.
Declining the drug due to its cost was not an option for us as we love our son greatly and will do anything to save him in this race against time.
We are reluctant to ask, but are now turning to crowdfunding to give Max the future he deserves - and we will be forever grateful for your support.
Thank you for considering our cause and please contact us if you have any questions.
Andrew and Kerri Sedmihradsky
Max's Big Ride
- Shelley Porfiri
- Shelley Porfiri
- Bernadette Mickle
- Monica Scott
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