This is Bowin, a 7-year-old boy who loves Pokémon, playing at the park and tacos.
Bowin has been unwell and experiences recurrent episodes of hypoglycemia and lethargy. He is currently battling Adrenoleukodystrophy (also known as 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 they hope Canada will help with. The Funk family is not a family who asks for help, they would rather be the helpers, but they are asking for their son. AFGC is sharing this member’s story to raise awareness of this rare disease and to help Bowin.
In 2019 he was diagnosed with Adrenal Insufficiency and was lucky that an ER doctor in Abbotsford noticed his tanned skin paired with his symptoms and sent bloodwork away. After testing it was confirmed he had Addison’s disease and Adrenoleukodystrophy (ALD). A rare x-linked genetic, incurable and fatal disease if left untreated. Adrenoleukodystrophy is a brain degenerative disease once activated and only 1 in 15,000 boys will ever have it.
The family spent the next four years with extended stays at the hospital for illness, and routine MRI’s to monitor his brain for lesions (areas of brain tissue that show damage from injury or disease). On June 15, 2023 they got the worst news possible. Bowin’s disease was now active and he already has 3 small lesions. The only treatments available are Gene Therapy in a clinical trial or Bone Marrow Transplantation. To make things more challenging, the family only knew of an ALD specialist in the USA that would cost the family over a million dollars out of pocket.
Most recently the family has met with the BMT Team at BC Children’s Hospital and learned they are equipped to treat Bowin, although they don’t have as much experience with ALD. For now, the family has decided to ask the government if they would cover the costs for out of country funding while still moving ahead with BCCH. The window to have treatment is urgent to halt the quickly progressing disease. Time is something they don’t have to lose and so they are moving forward with treatment at BCCH.
Bowin will undergo aggressive chemotherapy in a few weeks before his treatment. If all things go well he will then stay at BCCH for 100+ days and then follow another few months at Ronald McDonald House. Both parents will be unable to work for approximately 6 months.
Bowin has a sister, two dogs and a cat who will also need care. This family has a long and hard road ahead of them.
Please consider registering for Bone Marrow donation at Canadian Blood Services, there is no obligation to donate even if registered. Please also visit the Go Fund Me for updates and to support the family financially. On behalf of the Members of AFGC, the club will be donating $1,000.00 to Bowin’s Go Fund Me.
Bowin and his family need our help! If you can, please donate so this family can stay together and have one less stressor during these difficult times.
