18 month old Hailey-Ann looks like a typical toddler, when in fact she isn’t.
Hailey-Ann has autosomal dominant polycystic kidney disease (ADPKD), a life-threatening, genetic disease that causes multiple cysts to form on the kidneys, resulting in massive enlargement of the kidneys (up to three to four times their normal size). ADPKD can also lead to deterioration of kidney function and in some cases, kidney failure.
Hailey-Ann was found to have ADPKD when her mother Kristina went for her 21 week ultrasound. By the time she was born at 37 weeks, her kidneys were severely enlarged and covered in cysts.
While her kidneys are currently functioning, without treatment to help slow the progression of the disease, Hailey-Ann’s doctors say that she will eventually be in need of a life-saving kidney transplant. Hailey-Ann is among the 35,000 to 66,000 Canadians who have ADPKD.
September 4th is National PKD Awareness Day.
From Kristina, Hailey-Ann’s mother, “PKD Awareness Day for my family is an opportunity to raise awareness about this disease that people outside of the medical community have rarely heard of. PKD is honestly the most terrifying part of our lives today, and I dread the day that I hear from Hailey-Ann’s doctors that she needs to be put on the transplant list.”
PKD affects thousands in Canada and millions worldwide, yet many people have never heard of it. On September 4th, using the hashtag #PKDAwarenessDay is one way to raise awareness about this disease and the devastating impact it has on multiple generations.
You can learn more about Hailey-Ann’s journey here.
For ways you can get involved visit the PKD Foundation of Canada website.