Bowin Funk, 7, has a rare disease called adrenoleukodystrophy . The genetic disorder is causing lesions on his brain, and the clock is ticking at an unknown pace.
Chantel and her husband Jason, who are adept at advocating for Bowin’s health, threw themselves into the research and found out that ALD is being treated with some level of success by a doctor in Minnesota. But this is expensive, extensive treatment that would require the family to uproot for at least seven months.
In the United States where the screening is widespread, doctors can begin planning treatment and watch for progression right from a child’s birth. They can also start looking for a bone marrow match at birth, well before the disease progresses.Bowin didn’t have that benefit, as a Canadian, but the Funks are holding out hope for him. They are trying to enjoy a bit of summer as they can, visiting the water park with their son and his four-year-old sister, Harbor.
Meanwhile, the pool of donors could always be bigger and they are hoping that by sharing their story, more people will go through the screening process set via Canadian Blood Services. Even with successful treatment, Chantel said, his genetics will still make him susceptible to disease progression into his adult years. And the months ahead will include chemotherapy, loss of work, trying to run a business from afar, and the family being separated to reduce germs being shared.
Health Health Latest News, Health Health Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
Source: TerraceStandard - 🏆 24. / 68 Read more »