Faces of Erinoak
Allison's Story
Allison is a medically-fragile teen who jet skis.
Wedged safely between her parents, the life jacket keeps Allison upright and supports her head. Laughing and smiling, she loves the waves and bumps as she races down the lake.
It's remarkable considering the 14-year-old, whose developmental age is that of an infant, requires tube feeding, daily medical care, and has minimal use of her arms or legs. But it's not so remarkable considering her loving family, who calls Allison their "treasure" and embraces life with a special needs child.
"Our motto with Allison is we'll try anything once," explains mom Susan with a laugh. "It either works or it doesn't."
Susan and husband David had no warning their second child would be born with multiple special needs. The first sign of a problem appeared when she began having seizures, says Susan, an emergency room nurse. Admitted to the Hospital for Sick Children at four weeks of age, she was having 80 to 100 seizures a day.
At age five, doctors finally had a diagnosis that encompassed Allison's various symptoms - mitochondrial disorder, a neuro-metabolic condition that affects each child differently depending on which cells of the body are affected. For Allison, it has meant developmental delay, poor muscle tone, feeding and respiratory problems and other challenges.
Teamwork is how the Thorpes say they manage. Even daughter Kristen, 17, is devoted to Allison's care and well-being. The sisters' special bond is obvious, particularly at the piano where Kristen often sits Allison, despite her now long and lanky size, on her lap when playing. Allison, who loves music, responds with kicking legs and waving arms.
The family has another philosophy – appreciation for all that Allison has to give – a beautiful smile that makes people smile back, the little things for which she makes everyone grateful, and the wonderful caregivers and friends she has introduced to her family.
Among those individuals is the paediatric rehabilitation team at Erinoak where Allison and her family have received care and support since she was two years old. The seating clinic, orthopaedic clinic, occupational therapy, physiotherapy, resource fairs, family recreational activities, workshops and respite care are among the services the Thorpes have relied on for years.
"Our family-centred approach to therapy puts the family's needs first," says physiotherapist Monette Graham, who is a big part of Allison's care team. "Families know their children best, so it's important that we have Allison's family's input to help us set and meet goals for her therapy."
These days, Erinoak's respite care program is particularly important, says Susan. While grandparents have always been there to give Susan and David a break, lifting Allison is not as easy as it used to be and her medical needs have increased.
With expert nursing care, staff and volunteers, recreational activities, crafts and outings, Allison is well looked after at 'respite camp', which she attends one weekend every three months or so and one week in the summer.
"The staff is wonderful. They're always very welcoming. Being a nurse, I'm very comfortable leaving Allison with them. I can send her and not worry about the care she receives. I can actually go away for the weekend. I don't have to stay within arm's-length. I can recharge a little bit and spend time with Kristen."
It's the kind of care the doting Thorpes appreciate having always strived to provide every opportunity for Allison and honour her as an integral member of the family and community.
Be it trips to an island cottage, hiking, swimming, hot-tubbing, even an attempt at tubing behind a jet boat with Kristen holding tight – Allison is an adventurer.
But there's no doubt her favourite is zipping around the lake, which is why you may see a laughing and smiling Allison cruising by on a jet ski.