Zolgensma for Mighty Max
Donation protected
This is Max. Those of us who know him call him Mighty Max. He has been a fighter since long before his due date and now Max has his biggest challenge yet, the diagnosis of Spinal Muscular Atrophy type 2, a rare and debilitating disease. There are treatments available to slow the progression; however, the way to maximize length and quality of life is to seek Zolgensma - a gene therapy not approved or funded by Health Canada, a drug that must be administered before he reaches the age of two. The cost is $2.8 million CAD and it’s imperative we do everything we can to get Max this treatment. Who could disagree?
Max’s mom Bryarly experienced two large subchorionic hematomas on her placenta at 19 weeks of her pregnancy and spent over 4 weeks on bedrest giving Max every chance possible to make it to viability. On January 11, 2019, at barely 25 weeks, Bryarly and her husband Bowden rushed to their nearest rural hospital in Fairview, Alberta to discover that Bryarly was in labour and too far along to be transferred to a hospital with a delivery ward. Bryarly delivered Max with the NICU air ambulance landing only minutes before his arrival to intubate him and fly him to Edmonton where he would spend the next 91 days fighting for his life.
Born weighing only 1 lb 11 ounces, Max had numerous blood transfusions, a bedside surgery, a brain bleed, required ongoing respiratory therapy and was discharged on oxygen. He would spend a total of 6 months attached to an oxygen tank night and day, and 4 additional months on night time oxygen requiring special care from his parents.
Max developed at a normal rate in accordance with his adjusted age. He was reaching all the appropriate developmental milestones. It was around 12 months adjusted that his parents noticed a change. He stopped bearing weight on his legs completely, collapsed when put at his table, and arched his back when family held his hands to walk. His parents were worried but chalked it up to his prematurity. After a few months they began to reach out to healthcare professionals who had previously treated Max.
Tests were done to check for Cerebral Palsy which is common in premature babies with brain bleeds. The MRI came back clear, but they did not stop searching for an answer as to why Max had regressed in his motor development. In November 2020 genetic test results returned a diagnosis of a rare neuromuscular disease called Spinal Muscular Atrophy (SMA). Remarkably, this condition has nothing to do with his prematurity.
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.
While Max’s first two years of life have been marked with more challenges than most will face in a lifetime, he is a fighter, a survivor and a MIGHTY boy surrounded by a loving family and community who will move mountains to give him the best chance at being able to walk and have a normal, long and healthy life.
Please join Max’s family and community in raising funds for Max’s treatment and ongoing medical costs. Every donation counts!
To learn more about Max's story please visit Might Max Website or View Moving Mountains for Mighty Max via youtube.
Max’s mom Bryarly experienced two large subchorionic hematomas on her placenta at 19 weeks of her pregnancy and spent over 4 weeks on bedrest giving Max every chance possible to make it to viability. On January 11, 2019, at barely 25 weeks, Bryarly and her husband Bowden rushed to their nearest rural hospital in Fairview, Alberta to discover that Bryarly was in labour and too far along to be transferred to a hospital with a delivery ward. Bryarly delivered Max with the NICU air ambulance landing only minutes before his arrival to intubate him and fly him to Edmonton where he would spend the next 91 days fighting for his life.
Born weighing only 1 lb 11 ounces, Max had numerous blood transfusions, a bedside surgery, a brain bleed, required ongoing respiratory therapy and was discharged on oxygen. He would spend a total of 6 months attached to an oxygen tank night and day, and 4 additional months on night time oxygen requiring special care from his parents.
Max developed at a normal rate in accordance with his adjusted age. He was reaching all the appropriate developmental milestones. It was around 12 months adjusted that his parents noticed a change. He stopped bearing weight on his legs completely, collapsed when put at his table, and arched his back when family held his hands to walk. His parents were worried but chalked it up to his prematurity. After a few months they began to reach out to healthcare professionals who had previously treated Max.
Tests were done to check for Cerebral Palsy which is common in premature babies with brain bleeds. The MRI came back clear, but they did not stop searching for an answer as to why Max had regressed in his motor development. In November 2020 genetic test results returned a diagnosis of a rare neuromuscular disease called Spinal Muscular Atrophy (SMA). Remarkably, this condition has nothing to do with his prematurity.
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.
While Max’s first two years of life have been marked with more challenges than most will face in a lifetime, he is a fighter, a survivor and a MIGHTY boy surrounded by a loving family and community who will move mountains to give him the best chance at being able to walk and have a normal, long and healthy life.
Please join Max’s family and community in raising funds for Max’s treatment and ongoing medical costs. Every donation counts!
To learn more about Max's story please visit Might Max Website or View Moving Mountains for Mighty Max via youtube.
Fundraising team (6)
Kristie Bartlett
Organizer
Fairview, AB
Bowden Sych
Beneficiary
Bryarly Parker
Team member
Taman and Kelly McWatt
Team member
Dayna Buck
Team member
Blaine Bartlett
Team member