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Community rallying for little girl and her family
By Mary Giuliano
Shyanne is a lovely little girl and it’s only on a closer look is when you notice the enlarged upper lip.
When Shyanne was born she had a discolouration similar to a port wine stain on her lip. By age four her lip doubled in size and it became obvious something was wrong. The family travelled to Harvard Boston Clinic where specialists diagnosed Shyanne with AVM.
Mom Amber says, “Less than one per cent of the world population get it; it is like a monster is living inside her face, when they remove the mass if they miss one-quarter of a cell it will come back with a vengeance. The management is not a solution, when she is fully grown it will be necessary to remove the jaws, cheeks and nose and do a total reconstruction, and there are no guarantees.”
The family is having some financial problem due to dad Terry experiencing leg and foot injury 10 years ago as well as developing cysts in his right hand that necessitated surgery to repair torn tendons and cartilage. New cysts have grown and he has pain and swelling so he’s unable to work.
With Amber at home caring for the children and Terry unable to work, the lack of resources resulted in the loss of the family home in Calgary, so two years ago they returned to Fernie to live with Amber’s dad Art Beese.
“I never shed a tear in my life until I saw what’s happening to my daughter, if a tooth were to come through her lip we could lose my little girl,” Terry says emotionally. He adds, if “this happens pressure has to be placed on the lip so that it doesn’t bleed through.” When teachers were told this fear overtook them and Shyanne was told that she could no longer attend school unless her mother was in the classroom. With a young child at home this became very difficult and after a few weeks and much angst Terry contacted the Ministry of Education which was “very helpful and got Shyanne back into the school without Amber being present.”
A letter from Dr. Frankie O. G, Fraulin of the Alberta Children’s Hospital states: “Shyanne is a six-year-old girl followed through the Vascular Birthmark clinic at the Alberta Children’s Hospital. She has a type of birthmark that is called an arteriovenous malformation. This is an abnormal collection of arteries and veins that is causing an enlargement of her upper lip and can bleed easily if traumatized. Shyanne has some pain in the area and has had some episodes of bleeding but they have been controlled with direct pressure. She will require treatment of this malformation by a team of interventional radiologists and plastic surgeons. The blood flow to the malformation will be blocked (embolization) and 24-48 hours later the malformation will be resected. This could be a lengthy procedure and has specific risks. A date has not yet been set for the operation. One of the risks is that it may not be possible to completely remove the malformation.”
According to the Journal of Plastic Surgery, AVMs are uncommon errors of vascular development between the fourth and sixth weeks of gestation. Failure to prune unwanted primitive communications between the arterial and venous systems may result in a malformation. Most are obvious at birth while some are obvious during adolescence or adulthood. They have a tendency to grow with the child and after the individual has attained full growth. Treatment can be difficult, as frequently, following an apparently successful surgery regrowth of the tumour to a size larger than the original size can happen. Little is known about the origin.
There is a group of people who know of the situation and are considering fundraising.
Containers are at several locations including: 7-11, Bargain Store, Stephanie’s Glass, Chocolate Factory, Fernie Auto Parts, Hempire, Ford Dealership and Lordco. A trust fund for donations has also been established at the Fernie Scotiabank.
Mike Johnson, president of the Fernie Boxing Club, is planning a boxing event fundraiser in early February to help the family out.
Unless one is immersed in this type of circumstance you can’t begin to understand what is involved. Foremost is the constant fear of losing your child. There is the stress of constant doctor and hospital visits especially those that require travel outside of Fernie, travelling in bad weather and near misses of accidents. This family has already had one accident on route to Calgary that was caused by no fault of their own. There is the cost of medication, food, lodging and gas to get back and forth and while travelling with the sick child there is the worry of the other children that also need your love and attention.
The Osmond family isn’t asking for anything but if help is offered they won’t refuse especially if the disability insurance is cut off as has been threatened.
There is a lot happening here. If Terry could find employment in a job he is capable of doing with his injured hand; if only they weren’t facing a possible lifetime of surgeries for Shyanne; if only the medical attention needed was right here in town.
Life is often unfair, in this instance this family is reacting in the best way possible under the circumstances.
We never know when a family could face a situation where a hand up is required.
Fernie people have a reputation of being there for those in need; my hope is that in this instance all of our generous citizens will help again.
Lead image: The Osmond family.
– Mary Giuliano is the Mayor of the City of Fernie.
