Samantha Lieskovsky had just brought her three-month-old daughter home from a biopsy that required general anesthesia. Myla was sore, exhausted and frightened. Tyler, her husband, was in the nursery when a sound carried down the hall.
“I suddenly heard her giggle, and I ran out, and I asked Tyler, 'did I just hear her laugh?' she recalled. “And that happened to be the day, one of her hardest days. That was the first day that she ever laughed. And I think that the significance of that is that it just gave me so much hope that no matter what she’s facing, her joy and her spirit can’t be dulled, and she’s still going to choose that as the best day for her to have her first laugh.”
Now, at nearly two years old, Myla and her parents are preparing to leave Canada for treatment that does not exist here.
As of Wednesday evening, $21,320 had been raised toward a $28,000 goal from 115 donations, according to the family’s GoFundMe page. The campaign was set up by Myla’s aunt, Catherine Young of Red Deer.
The fundraiser explains that Myla was born with an extremely rare vascular disorder called Capillary Malformation-Arteriovenous Malformation, or CM-AVM, caused by a mutation of the RASA1 gene.
A life shaped by a rare condition
Blood does not flow normally through parts of Myla’s face — her cheek, mouth, nose, eye and ear — rushing instead through malformed vessels that strain and damage tissue. The result is a constant threat of bleeding, the family says.
Through it all, her mother insists Myla has remained joyful.
“She is doing well today,” Lieskovsky said. “She’s actually over at the Rotary Flames House for respite care for the last couple days. Tyler, my husband, he’s on the way over shortly to go and pick her up. But I’ve been having daily check-ins with her nurses, and they’ve been reporting that she’s having so much fun, and she’s just always making everybody there laugh, and they’re really enjoying it.”
According to the Alberta Children’s Hospital Foundation, Rotary Flames House, next to Alberta Children’s Hospital in Calgary, is one of only six pediatric hospices in Canada and the only one in Alberta.
A wedding weekend crisis
One of the scariest bleeds struck on what was supposed to be a joyful weekend in Canmore.
“We had just arrived at our Airbnb, and we were just having some lunch with Myla, when she suddenly started bleeding significantly from her mouth,” Lieskovsky said.
Her husband grabbed a dish cloth and held pressure. Within seconds, they knew it required medical intervention.
“And still, to this day, we don’t know what caused that bleed,” she said. “It just randomly happens.”
At Canmore General Hospital, staff tried clotting medication and other methods for two hours without success. With no ambulance or air transport available, they were preparing to drive to Calgary.
“Suddenly the medication just started to work, and the bleeding slowed, and we were able to get it under control,” she said.
Only then could they think about the wedding itself.
“At that point, we didn’t know if our wedding was going to happen. We didn’t know if Myla was going to be able to be there,” she said. “It ended up being that she was stable enough that we were able to get through the wedding, and she was able to be there. And it was a beautiful day, and I’m just so thankful that she was able to be part of it, because it just wouldn’t have been the same without her.”
The moment everything changed
Myla spent her first weeks in the neonatal intensive care unit.
“Since Myla is my only child, I think that I’ve never experienced motherhood without having to navigate medical challenges like right from the very beginning,” Lieskovsky said.
By the third week, the adrenaline that had carried her wore off.
“At that point, we had no clear plan of when she would be able to come home,” she said. “And I think at that three-week mark, something just really changed in me, and I realized that this is not a temporary thing for our family, and that our lives are changed forever.
“Even though her medical team seemed to also carry a lot of uncertainty, I had just told myself at that point that I knew that my role as her mom became that I have to be her voice, and I have to advocate for her in every single meeting and appointment that we have, because there is so much uncertainty about it, and it’s my job to know as much as I can possibly know to support her.”
The hardest moment for a sister
For Catherine Young, the hardest day wasn’t an emergency bleed or hospital transfer, but the day Myla was born.
“The hardest moment for me that I ever saw with Sam and Ty was the day that Myla was born,” she said. “It’s the hardest day, and it’s a day that a lot of other mothers will relate to because Myla was taken to the NICU immediately. Sam and Ty and Myla were all separated. Tyler went with Myla to NICU, and then I arrived at the hospital, and I was with Sam.
“We got a chance to go see Myla for about an hour in the NICU. And in that hour, they decided that Myla needed to be taken to Children’s Hospital, so they loaded her up in an ambulance and took her over to Children’s. But Sam still had to spend time at her hospital with her recovery time, so they were separated for 12 hours. I honestly think even though they’ve gone through all these days where it’s been harder or scarier, I think that is truly the most difficult time because they weren’t together.”
Young said that separation still haunts her.
“So many people get separated from their babies in those first moments when there’s a medical issue, and it’s very scary and it’s unnatural, because your body just wants to be with your baby,” she said. “I think it’s certainly the hardest moment that I’ve ever seen them go through. They were incredibly strong. I can’t even believe the strength that Sam and Ty had to get through that day. But that one sticks with me.”
Fighting for hope
Young has also taken on the task of raising funds.
“She’s got this gigantic, beautiful smile, and she’s the happiest baby in the world,” she said. “She’s had worse days than most people ever have in their life, and she continues to just be the happiest child I’ve ever seen. And that’s really a driving force for me, because I want to support her to continue to be that person and to watch that person grow — an amazing child, teenager, adult — and carry that personality through all of her years.”
Meeting the doctor who offered hope
Toronto’s SickKids Hospital eventually told the family it could not help.
“They had told us that they couldn’t help and that they just didn’t have the resources to safely treat Myla’s specific case,” Lieskovsky said. “As parents, that news was completely devastating.”
Within days of contacting the Vascular Birthmark Foundation, an emergency consultation had been arranged with Dr. Giacomo Colletti of Italy.
“On our Zoom call, he spent the first half an hour carefully reviewing her case, and he spoke about the fact that through his entire career, he has never treated a child like Myla,” she said.
“When we came to the end of our call, I remember him taking off his glasses and softening his tone, and he looked straight into the camera and he said, ‘we are going to be very close friends by the time that this is all over and that he will do everything in his power to make sure that our daughter gets help.’ After so many no’s from other specialists, hearing those words was just completely overwhelming. It just gave us so much hope and something to look forward to.”
According to the Vascular Birthmarks Foundation, Colletti is professor of maxillofacial surgery at the University of Modena and Reggio Emilia in Italy, director of VBF Italy and VBF Europe, and one of the leading facial surgeons in Europe for complex vascular malformations.
The vision of life after Italy
“Myla will likely need to return to Italy for multiple treatments, and she’s also going to need more procedures once she’s home in Alberta,” Lieskovsky said. “But the significance of Italy is really huge, because the goal is obviously to greatly reduce, or completely eliminate her risk of having life-threatening bleeds. That changes everything for us.
“I picture her being able to say, ‘Mommy, I want to go skiing, or I want to try this sport,’ and for us to not have to immediately think about, well, what’s the threat to her life doing this activity? So I just see her being able to fully enjoy her childhood without having constant fear that something could go wrong.”
A wave of community support
Donations poured in quickly after the fundraiser launched. One gift of $1,500 came from the mother of Samantha’s best friend. But it was the smaller amounts that left Young in awe.
“On the first day of the launch, as we were nearing $10,000, we’d crossed $9,000, getting close to $10,000, and I was glued to my phone, watching the numbers tick up,” she said. “It was ticking up at $10, $15, $20, and it was going so quickly, but with such small amounts. To me, that was overwhelming, because it was really a demonstration of the power that people have in a big group. If you get 100 people together and everybody donates $10, that’s $1,000 and it goes so far and it goes so quickly. That was like a really eye-opening, exciting moment.”
Reaching $10,000 carried practical meaning.
“That number signifies both the New York trips being covered,” she said. “Sam and Ty have already been to New York once. They’re going again in a few weeks, and each of those trips cost $5,000. So once we crossed that $10,000 mark, every single penny that we bring in now goes directly towards Italy.”
What they want remembered
“I would say above all, I just would want people to remember that Myla is just so much more than her condition,” Lieskovsky said. “She is so silly and she’s loving, and her smile, it truly lights up people’s days. I mean, even during one of her hospitalizations, she actually received a certificate for having the best smile on the unit. And I think that just speaks volumes about what kind of little girl she is.”
“For me, I really want Myla to know how much support she’s had right from the moment that she was born,” Young said. “As soon as Myla was born, and everybody heard that she had an untreatable condition — at the beginning, it was an untreatable condition — everybody wanted to help from all across the country. All our friends, all our family, every single person who heard about Myla wanted to help.
“The biggest thing for me, for Myla, is that I want her to know that everybody wanted to help, and that this was the best way for everyone to do that.”
The road ahead
The family will travel to New York again this fall to finalize Myla’s treatment plan with Colletti before heading to Italy in 2026 for the first round of procedures.
They know the road will be long. They also know they are not walking it alone.
“My hope is to help ease their financial burden as they continue down this tough road ahead,” Young said.
The GoFundMe campaign, ‘Myla Going to Italy for Treatment,’ can be found online.
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