Every season boasts its own colour palette. And spring this year promises to offer up a particularly vivid one for Émylou. In a few weeks’ time, she will be graduating from elementary school, the symbolic end of a major chapter in her young life – one where she lost her right leg to cancer. She has nevertheless emerged from her battle undefeated, proud and wiser for the experience.
Émylou was 8 years old when Sainte-Justine came into her life. A golf ball–sized growth had formed behind her right knee and the doctors confirmed it was sarcoma.
There was no time to lose. Émylou bravely went through two initial rounds of chemotherapy. Then came the bad news. Her medical teams, who up until then had been optimistic about her prognosis, said that she was not responding as well as they had hoped. The results were disappointing.
She and her parents were faced with a serious dilemma. They could 1) amputate the leg, or 2) begin radiation therapy and either accept that her right leg would stop growing and she would undergo a series of procedures through until adulthood, or stop the growth of both legs, forcing her to spend the rest of her adult life with a full-sized upper body and child-sized lower body. They ended up opting for the first choice – amputation.
Émylou was at the heart of the decision-making process. Her spirit of resilience was remarkable. She endured the procedure with tremendous energy and courage, and never once did we hear a word of complaint. All we could do is follow her example.
The operation was a success. To her family’s great surprise, Émylou came out of it stronger than ever. She even joked about the whole thing, giving a voice to her leg after she woke up from surgery.
For a whole year afterward, she was a regular at the Marie Enfant Rehabilitation Centre (CRME) at Sainte-Justine, with three, sometimes four, intense physiotherapy sessions a week. Unfortunately, she had to be held back a year at school because of it. But it didn’t matter: with steely determination, Émylou did her utmost to solider on through the recovery process.
A team of dedicated, kind and caring professionals was there to help her. Élyse Quézel, her orthotic and prosthetic technician, was one of them. Élyse’s role was to design her new prosthetic limb and follow up regularly with her to adjust to her changing level of mobility, her comfort, her growth and the activities she enjoys doing.
Élyse Quézel is part of the Technical Aids Department at the CRME, the only unit in Quebec focusing solely on pediatric applications. She works alongside 22 other orthotic and prosthetic technicians, including a team dedicated to prosthetics, as well as 15 orthotic and prosthetic engineers, who work closely with medical teams (physiatrists and orthopedists) and rehabilitation specialists (occupational therapists and physical therapists) who do everything they can to support the specific needs of each child.
The workshop where Élyse and her colleagues can be found is a veritable hive of activity and knowledge. They design, manufacture and adapt prosthetic and orthotic devices of all shapes and sizes: wrist splints, back braces, prosthetic legs that begin above the knee (like Émylou’s) or below the knee, and cranial helmets for babies, not to mention all sorts of devices adapted to specific activities such as kayaking, guitar playing, climbing and hockey. The list is as long as it is varied.
Émylou has two prosthetics: one for everyday use and the other for swimming. They have to be replaced about every other month in order to grow with her. Each uses a suction suspension system to make moving around easier and is supported by a socket, wrapped in a fabric of Émylou’s own choosing: a cat pattern from one of her old dresses.
Élyse and Émylou will continue to be a team until Émylou reaches adulthood. It’s easy to imagine how much of an impact the technological advances of the coming years, coupled with the support of the community, will have on her young life.
The future of health care is happening today. Thanks to the Pediatric Rehabilitation Technology Park, which has just been launched through the CRME, the possibilities in terms of technical aids have never been better.
Until recently, pediatric technical aids were often just a smaller version of a model made for an adult. But thanks to the Pediatric Rehabilitation Technology Park, orthotics and prosthetics fully personalized to the needs of each individual child are now a possibility.
Prototyping, smart materials, computer-assisted design… the list of all the new technologies that will be utilized in the coming years to make children’s lives better is a long one indeed. As you may well be aware, the Pediatric Rehabilitation Technology Park is a state-of-the-art facility to which CHU Sainte-Justine Foundation donors have contributed over $10 million.
And very soon, thousands of children in Quebec and around the world, including 4,000 young patients at Sainte-Justine, will reap the benefits.
In the meantime, Émylou is getting ready to say goodbye to Grade 6. With the support of her family, Élyse, Sainte-Justine and you, she is ready to take on the world and pursue her dreams with courage and dignity.
Thank you! Your support changes lives forever.