Shyanne Osmond balls up her fists inside a pair of worn boxing gloves, balancing on her toes and prepares to strike. She then proceeds to giggle as she tries to playfully punch her dad in the stomach.
Shyanne was diagnosed a year and a half ago with the rarest form of an arteriovenous malformation (AVM) — a type of congenital formation that creates an abnormal connection of blood between arteries and veins.
She will need to endure a lifelong series of surgeries to combat the formation.
The Osmonds have likened Shyanne’s condition to a “monster,” comparing it to living with a “timebomb.” It’s a monster that secretly lies beneath Shyanne’s lip and steals blood from her heart and other organs and a timebomb that could erupt at any second and spill her precious blood if not applied with pressure.
It wasn’t until a year and a half ago the Osmonds learned what it actually was. For the first few years of Shyanne’s life, doctors had told the Osmonds that the constantly growing mark on her lip was a birthmark.
Last week, Shyanne’s surgeries were finally booked for January.
“We’re so glad that they gave us Christmas,” said Amber, looking on the brighter side of things.
The first surgery will require blocking off the arteries in her lip. The second, an intense lasering of her mouth. Finally, doctors will cut Shyanne’s mouth open from edge to edge and try to scrape out as much of the AVM as possible.
Amber adds that there is a likelihood that the cells in Shyanne’s mouth will die and she could lose her top lip, necessitating a reconstruction.
At six-years-old, Shyanne hasn’t hit puberty yet. But she already has all of her adult teeth. Once fully grown, Shyanne will have both of her jaws, nose and cheekbones removed and her face reconstructed, as her AVM tumour runs through her bones — a rarity that makes her outcome much more dangerous, as most AVMs affect only tissue or muscle.
“They told us if we leave one cell behind, it could come back with a vengeance,” said Amber.
Amber explains this as Shyanne plays minecraft on an iPad in the background, her red dress sparkling in the light and her rubber boot-clad feet swinging.
No AVM could take away her fearless fashion choices.
The Osmonds, in general, attribute that same fearless nature to Shyanne.
“There’s nothing she doesn’t want to try,” said Terry, her dad. “She’s stronger than we are on most days.”
For every trek the Osmonds make to Calgary’s Children’s Hospital, Shyanne asks, “Are they going to fix my lip yet?”
It’s a kind of sad twist on the usual backseat chime, where children ask if they’ve reached their destination yet.
For Shyanne, there’s still a long way to go.
But in the meantime, she quads, she swims, she laughs with her friends and she loves going to school. Her local elementary school Isabella Dicken almost took away her seat in the classroom.
“If her lip were to break open at school, they didn’t want to take responsibility for her and get blood on their hands. So they didn’t want anything to do with that,” explained Terry.
Amber quit her job in order to sit with Shyanne every single day at school, helicopter parenting her to ensure her safety until the school finally gave in and allowed her attendance.
“We won that battle,” said Amber.
Amber acknowledges that the experimental surgery, none of which is covered by insurance, may not work.
“It’s going to be a life-long battle,” she said. “We already know that this is not a cure. There’s a pretty good chance it could make things worse.”
But that’s a chance the Osmonds are willing to take.
“I would never be able to forgive myself if we didn’t take this chance. I would wonder every day if I could have done something more for her,” said Amber.
That’s why Mike Johnson and the Fernie Boxing Club have stepped in, to help give Shyanne the fighting chance she deserves.
Johnson has been making the rounds to local Fernie businesses, hoping to recruit potential fighters to help raise money for Shyanne.
“We’re planning on training people here at the boxing club for 12 weeks then putting on a fundraiser,” explained Johnson.
It costs $150 to register, with half of that money going towards their membership at the boxing club, covering their insurance in the fight, and the other $75 going to the Osmonds.
“If we get 20 people, that’s 10 fights and that’s $1,500 straight towards the family, not including ticket sales,” said Johnson.
The tentative date is set for February 7 at the Community Centre.