A Saskatoon mom is going public about her son’s rare genetic disorder.
Crystal Leptich’s son Leo was diagnosed with epidermolysis bullosa shortly after he was born.
“As soon as he came out, the first words were ‘we don’t know what’s wrong with him,’ which is pretty terrifying to hear when you’re on the table and just waiting to meet your new baby. At that point, we noticed there was no skin on his feet and lower calves,” Leptich said.
The condition occurs in about one in 17,000 live births.
People with the condition are vulnerable to cuts and blisters, which can be caused by even the slightest friction.
With no cure, Leptich and her husband Adam manage Leo’s condition using specialized bandages, dressings and other supplies.
“We can’t use anything with adhesives in it because his skin is so fragile that will just tear his skin off, so it’s a lot of really specialized, very expensive products,” she said.
The costs can reach as high as $4,000 per month. Home care has provided supplies so far, but with Leo now eight months old, it’s set to end in the coming months.
Because Leo’s condition is so rare, it’s not listed for coverage under provincial programs.
Leptich said she’s been in contact with staff at both the Ministry of Health and Social Services.
While everyone is sympathetic, she’s had no answers and said she doesn’t feel like she’s being heard.
“We get passed on, ‘it’s more this person’s department, it’s more this person’s department,’ and really, after four months, it’s nobody’s department and nobody is taking any responsibility for being able to help us in this situation,” she said.
Leptich has since started a Facebook page documenting her family’s life with Leo.
She hopes speaking out will help get the province moving to find a resolution for her family.
In the meantime, she emphasized that while Leo’s health can make for some challenging days, she still experiences the same joy as any new mom.
“He is absolutely the most happy, funny, sweet engaged little guy and just if you look and see his bright smiles and his ease at laughter, I mean, he just makes every single moment of the day absolutely 100 per cent worth it.”
Ministry of Health reviewing file
Dave Morhart, acting director of the Ministry of Health’s drug plan and extended benefits branch said patient privacy prevented him from going into detail about the Leptich’s case.
He did confirm epidermolysis bullosa isn’t specifically listed for coverage but said there are procedures for such cases.
“In circumstances where there is a discontinuation of coverage or no coverage available, the ministry would certainly look at options and may consider providing coverage in exceptional circumstances on a case-by-case basis,” he said.
Morhart said the Leptichs’ case was being reviewed, but the process generally takes some time.
“This is something that wouldn’t be months. This would be something that would be within weeks where we would be able to gather the information we need to be able to provide any sort of decision on coverage,” he said.
He said the delay was necessary to make sure all potential avenues for coverage are explored.
“For us, it’s just a matter of wanting to be sure that we’re taking a look at all of the different options and to understand if there are potential options for existing coverage.”