This is Bowin, he is currently battling Adrenoleukodystrophy, or ALD. Recently it has been discovered that his ALD is progressing very quickly and now is the time for action. Stem cell replacement and Gene Therapy are both options to consider. This very rare disease will need to be treated by a specialist in Minnesota for upwards of 7 months. Cost of living will be expensive not to mention the medical bills which we hope Canada will help with. Bowin and his family need our help! Please donate whatever you can spare so this family can stay together and have one less stressor during these difficult times.
My name is Diandra and I have known Bowins mom, Chantel since we were 6 years old. I introduced her to her husband Jason years later and have watched their family grow from a young couple to a bustling family. Chantel and Jason have faced many hardships in their journey but none harder than the diagnosis of their son Bowin. This family has had to fight for a diagnosis and push doctors to look past the obvious as this disease is so rare. Chantel continues to run her own business and be an inspiration to so many with her positive outlook on life and determination.
Adrenoleukodystrophy (ALD) is a rare genetic condition that causes the buildup of very long chain fatty acids (VLCFAs) in the brain. When VLCFAs accumulate, they destroy the protective myelin sheath around nerve cells, responsible for brain function.
Adrenoleukodystrophy has no cure. However, stem cell transplantation may stop the progression of ALD if done when neurological symptoms first appear. Doctors will focus on relieving symptoms and slowing the diseases progression
According to the U.S. National Library of Medicine, the prevalence of ALD is 1 in 20,000 to 50,000 individuals worldwide.
In 2020 a Saskatchewan family received the same diagnosis and the canadian medical system was not equipped to treat ALD in the timely manner that is required for this disease that does not stop and wait for treatment. They ended up going to the specialists in the US to treat their son at a cost of close to $1 million. Luckily the treatment worked for this young boy but his parents are left to fight the Canadian government to help pay the bill... A request which has been denied.
My hope is that we can raise enough so that Bowins family doesn't need to sell off their entire life to support their son. Let's help get Bowin Healthy so they can come home and resume the life they have worked so hard for.
Check out the link below to learn more about ALD