Funds for Conner Finn
Donation protected
Conner Finn is an amazing, kind and loving four-year-old boy. He has a big heart, an incredible sense of humor and infectious smile. He loves hot wheels, monster trucks, trains, snuggling with his Blanket Bunny and playing with his two older brothers.
Craig and Kirsten Finn received devastating news on June 16th, 2020. Conner was diagnosed with x-linked Adrenoleukodystrophy (ALD), a rare and deadly genetic disease that affects 1 in 18 000 people. ALD destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and control our muscles. This disease ravages the brain and children affected deteriorate rapidly. Loss of vision, hearing, cognitive function and motor control occurs within six months to two years, resulting in a vegetative state and ultimately death. Since ALD is so rare, there is no ALD expertise in Canada
On June 30, 2020 Conner had an MRI in Saskatoon that revealed significant brain abnormalities. The Saskatchewan doctor and radiologist were unable to determine if Conner was in the window for treatment and provided no immediate plan on how to save Conner. With their backs against the wall, timely action was needed to try and save their son.
Knowing that the brain damage was progressing rapidly and reading some children were in a coma within six months of the onset, the Finns needed an immediate determination whether treatment was available. With no expertise in Canada and no plan proposed by Saskatchewan Health, they reached out to the Minnesota ALD Center of Excellence, one of only five in the world. On July 6th the Minnesota doctors ran tests and determined that Conner was in the very narrow window for a bone marrow transplant and immediately began the search for a match.
Since bone marrow transplants are not offered in Saskatchewan, on July 6th the Finns asked Saskatchewan Health for financial support for treatment at the ALD Center of Excellence in Minnesota. Their request was turned down, stating that a bone marrow transplant could be performed in Winnipeg on a similar timeline. Having already received a timeline from Minnesota, they asked Saskatchewan Health to provide the same and a list of Doctors with ALD experience so they could make an informed decision. The response they received from the ministry was, “The Ministry’s role is not to arrange or coordinate clinical therapy and/or clinical decision-making. In this circumstance, the Ministry’s role is to adjudicate Out-of-Country coverage requests per legislation and policy.” They never received a timeline or list of doctors with ALD experience from Saskatchewan Health. Given the unpredictable nature of Conner’s disease this left the Finns in an untenable position. Every day that passed Conner would continue to deteriorate.
In later conversations, Saskatchewan Health suggested looking into services at Sick Kids in Toronto, where only thirteen children with ALD had been treated. Unfortunately, Toronto has no physician specializing in ALD employed. By this time, Minnesota had already found a bone marrow match and was scheduling the transplant.
Craig and Kirsten were frustrated. They could not wait months in Canada for an available bed in Winnipeg or Toronto where little expertise in treating ALD was present. In Conner’s situation every day would bring further, irreversible brain damage. Watching him deteriorate and die was not an option.
They are now at the ALD Center of Excellence in Minnesota and have begun Conner’s bone marrow transplant process with experts who understand and know how best to treat ALD. The cost of the bone marrow transplant is estimated at $784,000 USD, just over $1 million CAD.
We appreciate any support you can provide through this GoFundMe campaign for Conner. Please share this page with others if you able.
Thank you for your support, care and love and keeping Conner in your prayers as he fights this battle.
Craig and Kirsten Finn received devastating news on June 16th, 2020. Conner was diagnosed with x-linked Adrenoleukodystrophy (ALD), a rare and deadly genetic disease that affects 1 in 18 000 people. ALD destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and control our muscles. This disease ravages the brain and children affected deteriorate rapidly. Loss of vision, hearing, cognitive function and motor control occurs within six months to two years, resulting in a vegetative state and ultimately death. Since ALD is so rare, there is no ALD expertise in CanadaOn June 30, 2020 Conner had an MRI in Saskatoon that revealed significant brain abnormalities. The Saskatchewan doctor and radiologist were unable to determine if Conner was in the window for treatment and provided no immediate plan on how to save Conner. With their backs against the wall, timely action was needed to try and save their son.
Knowing that the brain damage was progressing rapidly and reading some children were in a coma within six months of the onset, the Finns needed an immediate determination whether treatment was available. With no expertise in Canada and no plan proposed by Saskatchewan Health, they reached out to the Minnesota ALD Center of Excellence, one of only five in the world. On July 6th the Minnesota doctors ran tests and determined that Conner was in the very narrow window for a bone marrow transplant and immediately began the search for a match.
Since bone marrow transplants are not offered in Saskatchewan, on July 6th the Finns asked Saskatchewan Health for financial support for treatment at the ALD Center of Excellence in Minnesota. Their request was turned down, stating that a bone marrow transplant could be performed in Winnipeg on a similar timeline. Having already received a timeline from Minnesota, they asked Saskatchewan Health to provide the same and a list of Doctors with ALD experience so they could make an informed decision. The response they received from the ministry was, “The Ministry’s role is not to arrange or coordinate clinical therapy and/or clinical decision-making. In this circumstance, the Ministry’s role is to adjudicate Out-of-Country coverage requests per legislation and policy.” They never received a timeline or list of doctors with ALD experience from Saskatchewan Health. Given the unpredictable nature of Conner’s disease this left the Finns in an untenable position. Every day that passed Conner would continue to deteriorate.
In later conversations, Saskatchewan Health suggested looking into services at Sick Kids in Toronto, where only thirteen children with ALD had been treated. Unfortunately, Toronto has no physician specializing in ALD employed. By this time, Minnesota had already found a bone marrow match and was scheduling the transplant.
Craig and Kirsten were frustrated. They could not wait months in Canada for an available bed in Winnipeg or Toronto where little expertise in treating ALD was present. In Conner’s situation every day would bring further, irreversible brain damage. Watching him deteriorate and die was not an option.
They are now at the ALD Center of Excellence in Minnesota and have begun Conner’s bone marrow transplant process with experts who understand and know how best to treat ALD. The cost of the bone marrow transplant is estimated at $784,000 USD, just over $1 million CAD.
We appreciate any support you can provide through this GoFundMe campaign for Conner. Please share this page with others if you able.
Thank you for your support, care and love and keeping Conner in your prayers as he fights this battle.
Organizer and beneficiary
Neil Cameron
Organizer
Craig Finn
Beneficiary