“I’m now the boss of my own care.” - Jessica
At 13, Jessica has narrowed down her career choices to three: singer, photographer or veterinarian. Singing has a strong appeal. She’s very good and enjoys singing pop favourites by Jessica Farrell and Justin Bieber. She’s also drawn to animals. Dogs, hamsters and fish have been part of her family all her life.
Lately, she has discovered that she’s very good with the camera, and is interested in aperture and framing. “The shot has got to be perfect,” she says.
She may be juggling career ideas, but Jessica knows what she wants on other fronts – especially when it comes to her own care. When she was an inpatient at Holland Bloorview Kids Rehabilitation Hospital, Jessica learned to articulate her needs to the nurses and therapists.
“Holland Bloorview has done wonders for my daughter,” says her mom, Lynn. “It’s given her self confidence a boost. It’s made her grow. She accepted her condition quicker as a result of her care there.”
Jessica has pseudoachrondroplasia, a rare form of dwarfism. When she was diagnosed at 18 months, she was one of 230 people in the world with this condition. Jessica is short statured, and while her body is in proportion, her hip and leg bones were not formed properly. Her right leg in particular was significantly out of alignment. Correcting it involved breaking her right femur and ankle and putting them in position.
After surgery, Lynn’s plan was to bring Jessica home. However, her surgeon strongly advised that Jessica receive rehabilitation treatment at Holland Bloorview. When the surgeon discovered how soft Jessica’s bones were post surgery, Lynn realized she needed help.
The family was in luck. They did not have go far to receive exceptional care.
The rehabilitation process was very challenging for Jessica. For the first two weeks she did not want to leave her bed, and was afraid of the ‘fixater’ – a contraption pinned into her leg to help with bone growth and ankle rotation. Despite her pain and fear, Jessica marveled at the care and attention provided by the nurses and therapists at Holland Bloorview.
The staff educated and encouraged Jessica to clean her own fixater pins. She learned what worked best for her and to relay this information to the nurses. Always they involved Jessica and Lynn in all aspects of Jessica’s care.
“I never felt like I was being left behind,” says Lynn. “I was always included in everything, from her physiotherapy to her pin cleaning.”
Jessica made very quick progress during her eight weeks at Holland Bloorview. Her bones strengthened due to the weight bearing therapy, and grew at a fast rate. Now her surgeon anticipates removing the fixater sooner than expected, which means Jessica will be able to walk at her grade eight graduation.
“If Holland Bloorview wasn’t here then I don’t know what we would be able to do,” says Jessica. “I wouldn’t be where I am at my recovery if it wasn’t for this place.”
