Shyanne Osmond has learned to smile through adversity. The eight-year-old originally from Fernie was diagnosed with AVM – arteriovenous malformation, a condition that causes an abnormal connection of blood between her veins and arteries, creating a tumour on her upper lip. She was diagnosed at just six years old, but her mother Amber said they knew about it since she was born.
“She was born with it, we could see it from birth. They kept telling us it was a birthmark – something not serious,” said Amber.
However it was something rare and serious – so serious that Shyanne now has to travel to Boston for medical help.
Last week, a team of 12 doctors reviewed Shyanne’s condition and unanimously agreed that it would be best for her to receive treatment in Boston and that Canadian doctors could no longer help her.
“Doctors – 12 of them – were discussing her situation and what the best act is to do from here, and they came back and told us that Canada can no longer help our daughter and we have to go to Boston,” said Amber.
While the details are uncertain as to how many times the family will have to travel to Boston and how often, the family is preparing for regular trips to the United States for medical assistance.
“We will not be moving to Boston. Shy cannot fly, so we will be driving back and forth from Ontario to Boston, which is a nine-hour drive. The Ontario government, as far as we know at this point – because Canadian doctors have signed off on her, Ontario will pay the medical expense of it, so that is a big bonus. They strictly do all medical costs,” said Amber.
The family will have to pay for all travel and accommodation expenses while caring for Shyanne in Boston.
According to Amber, Boston has some of the best medical support for AVM in the world, and will be able to provide Shyanne with treatment that she did not have access to in Canada, such as certain types of drugs. While she is happy about Shyanne receiving the best help available, there is a side of it that makes Amber nervous.
“I’m very happy about it but on the other hand it is very scary because I have friends with AVM and Boston won’t take them. There is a severity level and Boston is very picky on who they bring in, so the fact that they are willing to bring in Shyanne, it makes us feel like this is really bad,” said Amber. “For Canada to say we can’t do anything else for her, it’s a really scary, sick feeling. But on the other hand, we knew from day one of her diagnosis that Boston had the best of the best. So on that aspect, if she has to live with this, at least we have the best of the best help we can get.”
The Osmonds relocated from Fernie to Burlington, Ont., last year to be closer to medical experts in the Toronto area. Since then, Shyanne’s condition has worsened. She is only fed soft foods while at school for fear that hard foods could cause bleeding in her mouth, where the tumour is located. The tumour has also grown into her nose and the back of her throat.
“At school she is not allowed hard food. She is only allowed soft food – soft cookies, stuff like that because it got to the point where every time she would put something in her mouth, whether it was a cracker or anything, her mouth would just start bleeding,” said Amber.
Despite all she has been through, Amber said her daughter’s spirit and smile are as strong as ever.
“She is always happy – like always,” she said