Mother fights for 'butterfly baby' Leo, and pricey essential wound care supplies
As a parent, Crystal Leptich is fighting for her son, but feels she's exhausted every avenue to get him the support he needs for a rare health condition.
"You'd do anything for your kid to have the best health and quality of life as possible," she said. "Speaking out publicly wasn't a decision I take lightly, but I feel like it's the only way to maybe get a little bit more attention and have some other voices behind us."
Seven-month-old Leo Leptich has epidermolysis bullosa (EB), a rare condition that causes his skin to break and blister at the slightest friction. EB affects one in 17,000 to 20,000 live births.
One of their health care providers has told the parents that protecting his fragile skin and nurturing his wounds with the best wound care available is literally the only way to manage the trauma to Leo.
In a Facebook video, Leptich shared the family's struggles, saying she's been fighting to get his essential wound care supplies covered by Saskatchewan provincial health care.
"I've probably talked to every single person in the Ministry of Health and Ministry of Social Services and gotten absolutely nowhere," she said.
The rare condition isn't one of the ones listed in the province's Saskatchewan Aids to Independent Living (SAIL) program, although exceptions can be made to provide support for people living with chronic health conditions.
"In order to receive extended health benefit coverage, you need to be on a social assistance program… but my husband and I both work," she said.
Facing high bills
Currently, their bills for medical supplies could be as high as $4,000 a month.
Home care has been helping the family and so far, have been bringing the supplies, but Leptich said that service will only be provided for a finite amount of time.
Some of the supplies the family needs are special order only, like the large form barrier they wrap Leo in to protect him from bumps.
Luckily, the company that makes the product donated two cases to the family when they heard they were struggling but those supplies won't last forever — and that item alone could cost up to $500 a week.
Leptich said she's been making a concentrated effort to get in touch with the government since March, including sending letters to people like the Minister of Health and making call after call, only to get passed elsewhere.
"Everyone's so sorry for us, and it's a shitty situation, but it's just not their department."
Ministry says coverage considered
Dave Morhart is acting executive director with the Drug Plan and Extended Benefits Branch with the Ministry of Health.
He noted that certain medical supplies are covered through the SAIL program, but it is limited.
"However, in cases where there may be exceptional circumstances, certainly the ministry would look at considering coverage on a case-by-case basis," he said.
He confirmed that the Ministry of Health has been working with the family, but in response to questions about the challenges Leptich said the family has had in accessing coverage, said he could not get into specifics, due to patient confidentiality.
"We are working with them going forward," he said, saying the ministry was "willing to look at coverage in exceptional circumstances, on case by case basis.
"I would encourage the family to continue to contact the ministry to see if there are options available, either through the ministry or health authority."
Leptich said she has poured her heart into her fight every day for the past three and a half months, and doesn't feel like her fight for Leo has yet been acknowledged, pushing her to take her story public.
"I'm just not being heard and this is the only way right now, I feel I can get anything across."
