Alberta family faces ‘uncertain future’ after toddler’s rare disease care funding denied

The Alberta family of a toddler with a rare condition is fighting with the province’s health-care system over its refusal to pay for a potentially life-saving treatment.

“Myla is such a happy, exploring little girl. She is always interested in figuring out her environment and how everything works and she’s very social and we always call her our little social butterfly,” said Samantha Lieskovsky, the toddler’s mother.

Samantha and her husband Tyler Lieskovsky live in Airdrie, about 30 minutes north of Calgary. Two-year-old Myla is their only child.

While she “enjoys every moment of being two,” Samantha says their daughter spent the first month of her life in the Neo Natal Intensive Care Unit at Calgary’s Alberta Children’s Hospital.

“They really weren’t sure what her condition was — it was presenting as different things,” Samantha said.

Finally, at six months of age, her family was provided with a diagnosis.

“After genetic testing, we were able to clarify that Myla was born with a complex vascular condition called capillary malformation-arteriovenous malformation (syndrome). It’s a really long word but it’s a CM-AVM for short.”

Samantha said the condition affects the way her daughter’s arteries and veins were formed and causes daily bleeding.

“It’s been causing declines in her vision, her hearing, as well as for her dental,” said Samantha, who explained there are four stages of the syndrome and Myla has Stage 3.

The toddler was assessed by specialists at both Alberta Children’s Hospital and Toronto’s Hospital for Sick Children and the family says they were told her condition was too high risk or too dangerous to proceed with standard forms of treatment.

Typically it would be treated with either surgery or embolization — a procedure that blocks or slows down the blood supply to the affected tissues — explained Samantha.

Doctors tried other approaches instead.

“Myla was put on an experimental chemotherapy medication. She has been on that now since she was about 10 months old,” Samantha said.

“It was able to stop the progression of the swelling, but it hasn’t stopped the condition from worsening.”

The family said they haven’t found any treatments available for Myla in either Canada or the United States that could offer a potential cure.

“It’s just so discouraging,” said her father Tyler. “Myla is our only child. We’re not just gonna throw in the towel and say nope, I guess they said no, so we’ll move on with our life.

“You know we have to have to keep fighting for her.”

But now, a ray of hope has emerged from a specialist in Italy: Dr. Giacomo Colletti, a maxillofacial surgeon.

“We ended up reaching out to the Vascular Birthmark Foundation based out of the U.S. We traveled down there for the first time in October 2024 and we met with Dr. Colletti,” Samantha said.

The parents said the doctor was confident a new techniques he is working on would be able to help Myla.

“He wanted to wait another year until Myla had grown and was stronger. So we went again last October and met with him again for a final consultation. At that point we scheduled our procedure in Italy.”

Get weekly health news

Receive the latest medical news and health information delivered to you every Sunday.

The procedure is called modified ElectroScleroTherapy, or MEST for short.

“So it uses a combination of both a strong medication as well as electrical pulses to directly target the malformed cells,” said Samantha, who claims the results so far have been very promising.

Last month, the family travelled to Italy for six weeks for the first round of treatment.

“Since the procedure, they’ve already seen a 90 per cent response from the malformed vessels — and so this is a really positive outlook — if we continue with treatment she could be potentially fully cured.”

“We have a follow-up coming in about a month where she’s going to need another scan and at that point we’ll be able to see how far the vessels have healed and then we can plan next steps from there,” said Samantha.

“It will likely be another treatment and then even once all the vessels have been addressed she’s going to need additional treatments for debulking and helping manage some of the other symptoms that have happened up to this point.”

In March the Lieskovsky family travelled to Italy to visit Dr. Giacomo Colletti for Myla’s first round of treatment.

To help cover the expenses — which cost about $100,000 per treatment — the Lieskovsky family applied to the province’s out-of-country health services committee.

According to it’s website, the committee is independent and operates at arm’s length from the Government of Alberta and Alberta Health Services and “considers applications for funding of insured health services not available in Canada.”

Samantha’s sister also started a Go Fund Me to help cover some of the costs.

While the family was still in Italy, in the middle of the treatment process, they were told their funding application had been denied.

“The first reason is that because it’s not a standard of care. So the treatment that we’re seeking isn’t a standard of care in Canada. But that just essentially means that because it’s practiced (in Italy). In Canada, it is considered experimental,” said Samantha.

“There is no standard of care for Myla here in Canada — so there’s no treatment options for her that are viable.”

“Secondly, they denied it because it’s not covered under the Alberta insurance plan that works with the committee, and because it is not covered under that insurance plan, they won’t cover it. So those are the two main reasons that it was denied.”

2:24
Rare diseases affect 1 in 12 Canadians: Toronto family shares diagnosis experience

It was a frustrating development for Myla’s parents.

“Canada’s standard of care would just be to keep her on chemo medication for the rest of her life. This procedure, that is showing it’s a potential cure, will stop it and let her live this healthy life and let her hopefully have a normal childhood,” said Tyler.

“The procedure is a cure.”

Fortunately, the Go Fund Me account has raised enough money to cover the first round of treatment — but Myla will likely require several more rounds.

Global News contacted the out-of-country health services committee to for more info about why the family’s funding application was denied, but was were told the committee does not comment on individual decisions.

The office of Alberta’s Minister of Primary and Preventative Health Services, Adriana LaGrange, also said it “cannot comment on individual cases due to patient confidentiality.”

“We recognize that seeking specialized treatment for a serious or rare medical condition can be extremely challenging for patients and their families. That’s why requests for out-of-country health care funding are reviewed by the independent Out of Country Health Services Committee, made up of medical experts,” a statement from the province added.

Emma Elder, Chair Open Arms Patient Advocacy says her group has seen a 45 per cent increase in demand for patient advocacy services in the past year.

Emma Elder, chair of the group Open Arms Patient Advocacy, says the Lieskovsky family’s story of being refused funding for out-of-country medical care is a familiar one.

“It’s unfortunate that we’re seeing it in all facets of health care,” Elder said.

“We’re seeing this in cancer care, in mental health, orthopedics, in our emergency departments. Albertans are just not getting access to the care that they need in a timely manner and it is coming to the point where patients are becoming debilitated and more and more sick waiting for that care.”

Elder said it’s a reflection a changing health-care system and structure that is inaccessible to patients.

“Patients are just fed up. They’re frustrated with long wait times in our emergency departments, getting cancer care, getting scans, getting the treatments that they need.”

“It’s unfortunate that it has to come to this. It has to to come media attention and public awareness in order to drive change,” Elder said.

The Lieskovsky family is in the midst of appealing the committee’s decision, but with limited time to do so, they are also looking for legal help from someone who can help them put together what they believe is a compelling case.

“Programs like this are supposed to be supporting families during difficult times and in these really unique, rare cases, and we’re just met with barrier after barrier,” said Samantha.

“It’s not just about us. It’s just the process in general,” said Tyler.

“We have this out of country thing for when we need to go out of the country and get all these procedures that aren’t in Canada, but yet we’re being told it is not (available) in Canada so then it’s not being approved. B

“What’s the point of the out of country funding, right?”

They aren’t the only ones struggling.

“There’s other families that are in our predicament. If we could just be more clear about the procedures and even just change the procedures and guidelines just so that it’s easier for the families — not just us, but other families as well,” Tyler added.

Without the treatment, her parents said Myla will be in and out of the hospital her entire life and face declining health.

“This treatment is incredibly important for Myla, her health,” said Samantha. “With this treatment there is potential of not just a cure, but having a very full and beautiful life.

“Now we’re faced with a really uncertain future.”

1:57
Protesters fear ‘American-style’ two-tiered health care is coming to Canada