The pandemic has been even more stressful for the Finn family.In mid-June, four-year-old Conner was diagnosed with a rare, sometimes fatal disease known as cerebral adrenoleukodystrophy (ALD), which affects about one in 18,000 people.“We understood that time is of the essence.
We have to get him in and get him treated as quickly as possible. We can’t wait weeks, months (or) years for treatment,” his father Craig said.
Saskatoon family wants a rare disease strategy for Canadians An MRI showed the disease was quite advanced and Conner’s parents felt they needed to make a quick decision in order to help him.Doctors at the ALD and Leukodystrophy Centre in Minnesota said Conner was in a small window for a bone marrow transplant, which has been.