The Lieskovsky family from Airdrie, Alberta, is locked in a struggle with the provincial health-care system, seeking funding for vital treatment for their two-year-old daughter, Myla, who suffers from a rare genetic disorder. Despite the potential for life-saving intervention, the province has denied their request for financial support, leaving the family frustrated and determined to fight for their daughter’s health.
Myla’s Journey: A Rare Diagnosis
Myla Lieskovsky, the only child of Samantha and Tyler Lieskovsky, has been a beacon of joy for her family. Described as a curious and sociable child, Myla’s early life was fraught with challenges. During her first month, she required intensive care at the Alberta Children’s Hospital, with doctors initially uncertain about the nature of her condition. It wasn’t until she was six months old that genetic testing confirmed she had capillary malformation-arteriovenous malformation (CM-AVM), a complex vascular disorder affecting her blood vessels.
Samantha shares that Myla’s condition leads to daily bleeding and has begun to impact her vision and hearing. “She is currently classified as Stage 3 of the syndrome, which poses significant health risks,” Samantha explains. With traditional treatment options deemed too risky, Myla’s family has faced an uphill battle in finding effective care.
Experimental Treatment in Italy Offers Hope
After consultations with specialists in Canada, the Lieskovsky family felt disheartened by the lack of viable options. Doctors recommended an experimental chemotherapy regimen, which has managed to halt the swelling but not prevent the condition from deteriorating. After extensive research, they discovered a potential breakthrough treatment offered by Dr. Giacomo Colletti, a maxillofacial surgeon in Italy.
In March 2024, the family travelled to Italy for the first round of modified ElectroScleroTherapy (MEST), a procedure that combines medication with electrical pulses to target malformed cells. “The results have been incredibly promising; we’ve already seen a 90 per cent response from the affected vessels,” Samantha says, expressing cautious optimism about Myla’s prognosis.
Funding Denial Leaves Family Searching for Solutions
Despite the success of the treatment, the family’s financial burden is considerable—each round costs approximately £100,000. They applied for funding through Alberta’s out-of-country health services committee, which reviews requests for treatments unavailable in Canada. However, while still undergoing treatment, they were informed that their application had been denied.
The committee cited two main reasons for the rejection: first, the treatment is not considered a standard of care within Canada, and second, it falls outside the coverage of Alberta’s insurance plan. “It feels utterly disheartening,” Tyler stated. “Our only option here is to keep Myla on chemotherapy indefinitely, which does not address the root of her condition.”
A Call for Change in Healthcare Funding
The Lieskovskys’ plight mirrors the experiences of many families grappling with similar challenges within Alberta’s healthcare system. Emma Elder, chair of Open Arms Patient Advocacy, noted a significant increase in demand for advocacy services, as families face growing barriers in accessing necessary medical care. “Patients are fed up with long wait times and inadequate treatment options,” she remarked.
The Lieskovsky family is currently appealing the committee’s decision, but with limited time and resources, they are seeking legal assistance to bolster their case. “This isn’t just about us; it’s about all the families struggling to secure funding for potentially life-saving treatments abroad,” Tyler asserts.
Why it Matters
The Lieskovsky family’s struggle highlights the urgent need for reform in how out-of-country treatments are funded and accessed within Alberta’s healthcare system. Their fight is not only for Myla’s future but also for countless other families who find themselves in similar situations, navigating a system that often places bureaucratic barriers above patient care. Ensuring equitable access to innovative treatments is essential to improving health outcomes and restoring hope for families in need.
