{"id":622388,"date":"2026-04-23T02:44:15","date_gmt":"2026-04-23T02:44:15","guid":{"rendered":"https:\/\/www.newsbeep.com\/ca\/622388\/"},"modified":"2026-04-23T02:44:15","modified_gmt":"2026-04-23T02:44:15","slug":"alberta-family-faces-uncertain-future-after-toddlers-rare-disease-care-funding-denied","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ca\/622388\/","title":{"rendered":"Alberta family faces \u2018uncertain future\u2019 after toddler\u2019s rare disease care funding denied"},"content":{"rendered":"

The Alberta family of a toddler with a rare condition is fighting with the province\u2019s health-care system over its refusal to pay for a potentially life-saving treatment.<\/p>\n

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\u201cMyla is such a happy, exploring little girl. She is always interested in figuring out her environment and how everything works and she\u2019s very social and we always call her our little social butterfly,\u201d said Samantha Lieskovsky, the toddler\u2019s mother.<\/p>\n

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

While she \u201cenjoys every moment of being two,\u201d Samantha says their daughter spent the first month of her life in the Neo Natal Intensive Care Unit at Calgary\u2019s Alberta Children\u2019s Hospital.<\/p>\n

\u201cThey really weren\u2019t sure what her condition was \u2014 it was presenting as different things,\u201d Samantha said.<\/p>\n

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Finally, at six months of age, her family was provided with a diagnosis.<\/p>\n

\u201cAfter genetic testing, we were able to clarify that Myla was born with a complex vascular condition called capillary malformation-arteriovenous malformation (syndrome)<\/a>. It\u2019s a really long word but it\u2019s a CM-AVM for short.\u201d<\/p>\n

Samantha said the condition affects the way her daughter\u2019s arteries and veins were formed and causes daily bleeding.<\/p>\n

\u201cIt\u2019s been causing declines in her vision, her hearing, as well as for her dental,\u201d said Samantha, who explained there are four stages of the syndrome and Myla has Stage 3.<\/p>\n

\t\t\t\t\tTwo-year-old Myla Lieskovsky suffers from a rare genetic disorder called capillary malformation-arteriovenous malformation syndrome.\t\t\t\t <\/p>\n

\t\t\t\t\tGlobal News\t\t\t\t<\/p>\n

The toddler was assessed by specialists at both Alberta Children\u2019s Hospital and Toronto\u2019s 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.<\/p>\n

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Typically it would be treated with either surgery or embolization \u2014 a procedure that blocks or slows down the blood supply to the affected tissues<\/a>\u00a0\u2014 explained Samantha.<\/p>\n

Doctors tried other approaches instead.<\/p>\n

\u201cMyla was put on an experimental chemotherapy medication. She has been on that now since she was about 10 months old,\u201d Samantha said.<\/p>\n

\u201cIt was able to stop the progression of the swelling, but it hasn\u2019t stopped the condition from worsening.\u201d<\/p>\n

\t\t\t\t\tAfter consulting with medical specialists at the Alberta Children\u2019s Hospital in Calgary and the Hospital for Sick Children in Toronto, Myla\u2019s parents say they were told it was too high risk or too dangerous to proceed with standard forms of treatment.\t\t\t\t <\/p>\n

\t\t\t\t\tGlobal News\t\t\t\t<\/p>\n

The family said they haven\u2019t found any treatments available for Myla in either Canada or the United States that could offer a potential cure.<\/p>\n

\u201cIt\u2019s just so discouraging,\u201d said her father Tyler. \u201cMyla is our only child. We\u2019re not just gonna throw in the towel and say nope, I guess they said no, so we\u2019ll move on with our life.<\/p>\n

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\u201cYou know we have to have to keep fighting for her.\u201d<\/p>\n

But now, a ray of hope has emerged from a specialist in Italy: Dr. Giacomo Colletti<\/a>, a maxillofacial surgeon.<\/p>\n

\u201cWe 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,\u201d Samantha said.<\/p>\n

The parents said the doctor was confident a new techniques he is working on would be able to help Myla.<\/p>\n

\u201cHe 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.\u201d<\/p>\n

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The procedure is called modified ElectroScleroTherapy, or MEST for short.<\/p>\n

\u201cSo it uses a combination of both a strong medication as well as electrical pulses to directly target the malformed cells,\u201d said Samantha, who claims the results so far have been very promising.<\/p>\n

Last month, the family travelled to Italy for six weeks for the first round of treatment.<\/p>\n

\u201cSince the procedure, they\u2019ve already seen a 90 per cent response from the malformed vessels \u2014 and so this is a really positive outlook \u2014 if we continue with treatment she could be potentially fully cured.\u201d<\/p>\n

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\u201cWe have a follow-up coming in about a month where she\u2019s going to need another scan and at that point we\u2019ll be able to see how far the vessels have healed and then we can plan next steps from there,\u201d said Samantha.<\/p>\n

\u201cIt will likely be another treatment and then even once all the vessels have been addressed she\u2019s going to need additional treatments for debulking and helping manage some of the other symptoms that have happened up to this point.\u201d<\/p>\n

\t\t\t\t\tCourtesy: Samantha Lieskovsky\t\t\t\t<\/p>\n

In March the Lieskovsky family travelled to Italy to visit Dr. Giacomo Colletti for Myla\u2019s first round of treatment.<\/p>\n

To help cover the expenses \u2014 which cost about $100,000 per treatment \u2014 the Lieskovsky family applied to the province\u2019s out-of-country health services committee.<\/p>\n

According to it\u2019s website, the committee is independent and operates at arm\u2019s length from the Government of Alberta and Alberta Health Services<\/a>\u00a0and \u201cconsiders applications for funding of insured health services not available in Canada.\u201d<\/p>\n

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Samantha\u2019s sister also started a Go Fund Me to help cover some of the costs.<\/a><\/p>\n

\t\t\t\t\tThe treatment Myla underwent in Italy is called modified ElectroScleroTherapy, or MEST for short and it uses a combination of strong medication and electrical pulses to target the malformed cells.\t\t\t\t <\/p>\n

\t\t\t\t\tCourtesy: Samantha Lieskovsky\t\t\t\t<\/p>\n

While the family was still in Italy, in the middle of the treatment process, they were told their funding application had been denied.<\/p>\n

\u201cThe first reason is that because it\u2019s not a standard of care. So the treatment that we\u2019re seeking isn\u2019t a standard of care in Canada. But that just essentially means that because it\u2019s practiced (in Italy). In Canada, it is considered experimental,\u201d said Samantha.<\/p>\n

\u201cThere is no standard of care for Myla here in Canada \u2014 so there\u2019s no treatment options for her that are viable.\u201d<\/p>\n

\u201cSecondly, they denied it because it\u2019s not covered under the Alberta insurance plan that works with the committee, and because it is not covered under that insurance plan, they won\u2019t cover it. So those are the two main reasons that it was denied.\u201d<\/p>\n

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\tRare diseases affect 1 in 12 Canadians: Toronto family shares diagnosis experience\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/p>\n

It was a frustrating development for Myla\u2019s parents.<\/p>\n

\u201cCanada\u2019s standard of care would just be to keep her on chemo medication for the rest of her life. This procedure, that is showing it\u2019s a potential cure, will stop it and let her live this healthy life and let her hopefully have a normal childhood,\u201d said Tyler.<\/p>\n

\u201cThe procedure is a cure.\u201d<\/p>\n

Fortunately, the Go Fund Me account<\/a> has raised enough money to cover the first round of treatment \u2014 but Myla will likely require several more rounds.<\/p>\n

Global News contacted the out-of-country health services committee to for more info about why the family\u2019s funding application was denied, but was were told the committee does not comment on individual decisions.<\/p>\n

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The office of Alberta\u2019s Minister of Primary and Preventative Health Services, Adriana LaGrange, also said it \u201ccannot comment on individual cases due to patient confidentiality.\u201d<\/p>\n

\u201cWe recognize that seeking specialized treatment for a serious or rare medical condition can be extremely challenging for patients and their families. That\u2019s 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,\u201d a statement from the province added.<\/p>\n

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.<\/p>\n

Emma Elder, chair of the group Open Arms Patient Advocacy, says the Lieskovsky family\u2019s story of being refused funding for out-of-country medical care is a familiar one.<\/p>\n

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\u201cIt\u2019s unfortunate that we\u2019re seeing it in all facets of health care,\u201d Elder said.<\/p>\n

\u201cWe\u2019re 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.\u201d<\/p>\n

Elder said it\u2019s a reflection a changing health-care system and structure that is inaccessible to patients.<\/p>\n

\u201cPatients are just fed up. They\u2019re frustrated with long wait times in our emergency departments, getting cancer care, getting scans, getting the treatments that they need.\u201d<\/p>\n

\u201cIt\u2019s unfortunate that it has to come to this. It has to to come media attention and public awareness in order to drive change,\u201d Elder said.<\/p>\n

\t\t\t\t\tSamantha and Myla Lieskovsky are photographed with Dr. Giacomo Colletti following the first round of treatment in Italy in March.\t\t\t\t <\/p>\n

\t\t\t\t\tCourtesy: Samantha Lieskovsky\t\t\t\t<\/p>\n

The Lieskovsky family is in the midst of appealing the committee\u2019s 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.<\/p>\n

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\u201cPrograms like this are supposed to be supporting families during difficult times and in these really unique, rare cases, and we\u2019re just met with barrier after barrier,\u201d said Samantha.<\/p>\n

\t\t\t\t\tTyler Lieskovsky says they are fighting, not just for their family, but for other families who have struggled to obtain funding for potentially life-saving medical treatment only available in other countries.\t\t\t\t <\/p>\n

\t\t\t\t\tCourtesy: Samantha Lieskovsky\t\t\t\t<\/p>\n

\u201cIt\u2019s not just about us. It\u2019s just the process in general,\u201d said Tyler.<\/p>\n

\u201cWe have this out of country thing for when we need to go out of the country and get all these procedures that aren\u2019t in Canada, but yet we\u2019re being told it is not (available) in Canada so then it\u2019s not being approved. B<\/p>\n

\u201cWhat\u2019s the point of the out of country funding, right?\u201d<\/p>\n

They aren\u2019t the only ones struggling.<\/p>\n

\u201cThere\u2019s 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\u2019s easier for the families \u2014 not just us, but other families as well,\u201d Tyler added.<\/p>\n

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Without the treatment, her parents said Myla will be in and out of the hospital her entire life and face declining health.<\/p>\n

\u201cThis treatment is incredibly important for Myla, her health,\u201d said Samantha. \u201cWith this treatment there is potential of not just a cure, but having a very full and beautiful life.<\/p>\n

\u201cNow we\u2019re faced with a really uncertain future.\u201d<\/p>\n

\t\t\t\t\t\t\"Click<\/p>\n

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