Myla Lieskovsky, a toddler from Airdrie, Alberta, Canada, was born in November 2023 with Capillary Malformation-Arteriovenous Malformation (CM-AVM), an extremely rare genetic vascular disorder. The condition caused a complex malformation of blood vessels on the left side of her face and head. From the start it produced visible swelling, frequent bleeding of varying severity, and progressive effects on her breathing, vision, hearing, and overall quality of life.

Canadian specialists determined that no suitable treatment options existed locally for a case of this rarity and severity. Through the Vascular Birthmarks Foundation, the family connected with Dr. Giacomo Colletti, a leading maxillofacial surgeon in Italy specializing in complex vascular malformations. He recommended a protocol involving modified ElectroScleroTherapy (MEST)—a combination of medication and electrical pulses targeting the abnormal vessels—along with related procedures.

The family traveled internationally for consultations (including in New York) and treatment in Italy. Early results were described as promising, with significant reduction in the malformed vessels. However, the journey has been marked by major challenges. After a primary surgery, Myla required numerous additional procedures due to complications. Alberta’s out-of-country health funding was denied on the grounds that the approach is not considered standard of care in Canada and is viewed as experimental.

Despite the physical toll and financial strain (with treatment and travel costs running into tens or hundreds of thousands of dollars per round), Myla continues to display remarkable resilience. She wakes with a smile, loves the color yellow, her Grinch toy, books, and bubbles, and spreads joy to those around her. Her parents, Samantha and Tyler Lieskovsky, along with extended family, have relied on community crowdfunding, faith, and determination while continuing to seek the best possible care.

Samantha’s message to other families facing rare conditions is clear and powerful: “Never stop looking for answers. Get another opinion. And another.”

Myla’s story highlights both the profound difficulties of ultra-rare diseases and the strength of a young child and her family who refuse to give up. Further treatment remains ahead, and ongoing support from well-wishers continues to make a difference.

Sources

• Local Canadian reporting from DiscoverAirdrie, Lakeland News, Canada News Media, and CTV-related coverage of the Lieskovsky family and Myla’s diagnosis and treatment journey.
• Family GoFundMe updates and statements describing CM-AVM, international consultations with Dr. Giacomo Colletti, MEST therapy in Italy, funding denial, and Myla’s personality and progress.
• Medical background on Capillary Malformation-Arteriovenous Malformation (CM-AVM) syndrome from clinical resources and genetic descriptions.