Saskatoon mother of butterfly baby calling for expanded health coverage
Crystal Leptich and her husband Adam spend a minimum of 45 minutes every two days bandaging baby Leo’s limbs, torso or both to address the 8-month-old’s epidermolysis bullosa (EB).
His rare condition causes skin to blister and tear. The skin is so delicate, it is often compared to a butterfly’s wings.
“It’s become just our way of life. Popping blisters and doing bandage changes is our version of normal,” Leptich said.
There is no cure for EB.
Currently, Leo’s bandages are paid for through Saskatchewan’s home care program, his mother said, though the family is concerned their service will be phased out.
Based on a quote from a local supplier, the family would have to pay $48,000 if not for home care.
“Basically, we’re just wanting some assistance in covering the dressings that we want to use to sustain his quality of life,” Leptich said.
EB medical supplies are not included in the Saskatchewan Aids to Independent Living program, which provides coverage for medical equipment, devices, products and supplies.
“I think in any case, if there are exceptional circumstances, the Ministry [of Health] is open to looking at those things on a case-by-case basis and may consider coverage,” said Dave Morhart, acting executive director for Saskatchewan’s drug plan and extended benefits branch.
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The Leptich family is also working with the Dystrophic Epidermolysis Bullosa Research Association of Canada (DEBRA Canada).
DEBRA Canada has a medical assistance fund to help keep families from paying for services out pocket.
“The volume of wound care that is needed is large. It’s beyond what most people would have to deal with,” said Erin Hoyos, secretary and administrative officer with DEBRA Canada.
EB affects roughly 1 in 17,000 births with an estimated half a million people living with the condition worldwide.
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