Myla Lieskovsky, who isn’t even two years old, is living with an extremely rare vascular disorder that has created a large malformation on the left side of her face.
After being born in November 2023, doctors looked into the swelling on her face.
She spent the first month of her life in the Alberta Children’s Hospital NICU.
“They had done a bunch of different tests, MRIs and CTs and they kept repeating the tests because they saw that it was some kind of vascular malformation,” said her mother Samantha Lieskovsky.
The test revealed a capillary malformation-arteriovenous malformation (CM-AVM).
“They had kept telling us that that’s basically impossible. They’d never seen that before,” said Lieskovsky.
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Shortly after, Myla had genetic testing done in Boston, which confirmed the diagnosis.
The disease causes blood to rush through her arteries causing strain on her heart.
Myla’s symptoms include daily bleeding on her teeth, gums and nose while her vision, and hearing are also impacted.
Blood does not flow normally through parts of Myla’s face, instead rushing through malformed vessels that strain and damage tissue.
“Nobody really knew anything about like the severity of her case,” said Lieskovsky.
“It’s definitely really changed our life, but, Myla has also changed our life in a really positive way.”
The family did do an online appointment with The Hospital for Sick Children in Toronto but were told the facility does not have any treatments that would be safe for her.
They then reached out to the Vascular Birthmarks Foundation out of New York in September 2024 and went to the foundation’s super clinic, which connect patients with specialists from all over the world.
“It’s rare with most cases to see one so large in such a young child. Okay. So that’s just, absolutely unheard of or extremely rare in that population in itself,” said the foundations’ founder Linda Rozell-Shannon.
“Most of the time these show up as a very small lesion at birth. And then throughout life, especially around puberty, pregnancy, taking birth control, menopause, they really explode because they’re stimulated by hormones.”
They are now working with a Dr. Giacomo Colletti in Italy who specializes in vascular surgeries, and performs modified electro-scleral therapy treatment.
“That is our biggest hope and that’s our biggest goal even though her condition is really rare, that this treatment is going to work and that she’s going to be able to be home and be healed and be able to say, ‘mommy, I want to go and play sports,’” said Lieskovsky.
The family is scheduled to meet with Colletti in New York in October before heading to Italy for the operation in 2026.
A GoFundMe has been launched to help them cover the cost of medical and travel related expenses.
