Francine Desrosiers and Jean Emond have known each other for 26 years. In 1988, Jean’s mother, who knew Francine’s brother well, thought that Francine would make a great girlfriend for her son… and she wasn’t wrong! They met at a dinner and, despite Francine’s reservations, they interacted, got along well and made plans to see each other the following week. But Francine suffered from facioscapulohumeral dystrophy. However, her condition wasn’t apparent and she was hesitant to tell Jean about it. She was afraid he wouldn’t want to pursue the relationship. But one day, while they were out at La Ronde amusement park, Francine stumbled and fell flat on her face. So she finally mustered up her courage and told Jean about her condition over the phone. Jean was surprised but never once thought of backing out of the relationship. A few hours later, he showed up at Francine’s door with a bouquet of flowers.
Since then and despite the progression of Francine’s illness, Jean and her have supported each other and have built a good life together. When the question of whether or not to have children came up, they both thought about it long and hard. They both loved children, but the fear of passing on the disease made them decide not to have any. Jean says he has no regrets; he has bonded with his nieces and nephews and feels completely fulfilled. It’s a little different for Francine. She does have some regrets, especially when she sees children… but it’s all a matter of acceptance!
Jean says he loves Francine deeply. He appreciates her patience, her kindness, her sense of humour and her understanding. He likes spending time with her and talking with her. He accepts her as she is. Francine also professes her deep love for Jean. She’s comfortable with him; he’s attentive, funny and patient, especially with an illness that keeps progressing and that brings a lot of changes in their lives.
The dystrophy can sometimes make their lives difficult. For several years now, Jean has observed the changes in Francine… the loss of certain functions. For example, a few years ago she could walk but now must use an electric wheelchair. Several adaptive devices are now also part of their daily life. Jean says they find a way to cope… that’s life. They’d like to travel and go to the restaurant more often, and be involved in more social activities, but fully accessible restaurants or museums aren’t easy to find…
How have they managed to stay together all these years? Communication, openness, listening, love. Respect for one another and for each other’s differences. Being able to make compromises and accept the good… as well as the bad.
We wish both Jean and Francine a long and happy life…
A few weeks ago, I received a walker. It’s superb! It’s a funny thing to say about a device like that, but it’s true. At first, I told myself: “I’m going to wait a little before I start using it; I’m not quite there yet!” But that evening, I was looking at it and I felt so sad. All of a sudden, reality set in: before long, I wouldn’t be able to attend my son’s recitals, or take Eloise by the hand and go for a walk like I’ve done so often with my eight other grandchildren. I was supposed to go grocery shopping the next day. After hesitating a bit, I took the walker out and immediately realized how much easier my life would be with it! Well, I am there! I walk faster; I feel a lot steadier; in short, my walker comes in really handy. And I’m sure I can put Ellen on the seat and go for a few walks with her.”
In September 2011, after appearing on the TV program Un moment de vérité (A Moment of Truth) on CBC’s French-language television network Radio-Canada, the Quebec Division of Muscular Dystrophy Canada won a Jaco robotic arm. In November of that same year, we launched a contest to award this robotic arm to a person with a neuromuscular disorder. A selection committee made up of someone with muscular dystrophy and three health professionals took the time to carefully review each of the 30 applications received. It was a very difficult task, but in the end they selected Alexandre St-Pierre, a 15-year-old young man from l’Islet-sur-Mer with spinal amyotrophy.
After several attempts and a change of chairs, the Jaco arm was installed in November 2012. Alexandre uses it to work on his computer, insert a music album in the CD player, open the cupboard and take out treats (for his dog he says…), use the elevator in his home, hold his cup of coffee and his bowl of popcorn, eat, and catch the TV remote control (which his brother always throws on the sofa!), in other words, to be more independent! Two controls were installed: one for his electric wheelchair and the other one for the Jaco arm.
There are about 200 Jaco arms being used around the world. In Quebec, 6 were purchased by the Canadian Armed Forces and about 10 are being used for research purposes in rehabilitation centres. Muscular Dystrophy Canada is the first and only community organization to purchase this type of equipment. Six Jaco arms were also purchased by private individuals and paid for through personal fundraising activities.
“I’m 29 and I have four children, two of whom, Christopher, 10, and Justin, 8, have Duchenne muscular dystrophy. Nothing prepared me for this because there was no history of muscular dystrophy in our family. This diagnosis changed my life and we went through the same thing with Justin. I often feel guilty because I know that the disease is transmitted by the mother. In fact, I know that I have no control over my genes, but I just can’t help feeling responsible. Daily life is a lot harder with two sick children, but my boys are exceptional and I love them with all my heart. I try to be the best mother I can be for them. I want them to have a normal life like all other children their age, even though it’s sometimes difficult. When I have moments of doubt, instead of letting myself get discouraged so they won’t be sad, I focus my thoughts on them and I find the strength to go on. Before Muscular Dystrophy Canada gave me the equipment, I couldn’t take proper care of Christopher because as he got older, I couldn’t lift him anymore; he was becoming too heavy. This situation made me very sad and I felt responsible. But since Muscular Dystrophy Canada gave us the specialized equipment, including a Scalamobil (wheelchair stair climber), I can carry Christopher with little effort, both at school and at home. Daily life is a lot easier for all of us. Justin can still walk for now, but I know that sooner or later, he will also need to use a wheelchair. My sons are my reason for living; most of all, they show me what real courage is all about. They are living proof that one can be happy despite everything, even when your reality doesn’t match your dreams…”
– Marie-Claude Morel, mother of Christopher and Justin Morel-Andrade
Nine-year-old Anthony Auclair is an avid hockey fan. One look inside his bedroom where the walls are covered with Montreal Canadiens posters and other memorabilia, or listening to him talk about players and statistics will convince you. But Anthony has a hard time playing hockey… understandably, since he has Duchene muscular dystrophy. Not one to give up easily, he chose something else… sledge hockey; he’s been playing for a few months and absolutely loves it. Almost two years ago, Carole, Anthony’s mom, learned that her little boy had Duchenne muscular dystrophy. “He’s never been very good in sports, but I wasn’t either when I was his age, so before we got the diagnosis, I thought it was normal. Still, I decided to see an occupational therapist when Anthony was in kindergarten.” At the end of kindergarten, doctors diagnosed him with attention deficit disorder. In grade one, after a blood sample taken in order to adjust his medication, he was taken to Ste-Justine Hospital, where a diagnosis was made in May 2010. No one in his family has this disorder… and his mother doesn’t even carry the gene. But fate has so decided. It was a hard blow for this single mother. But she decided to get informed, to roll up her sleeves and to live one day at a time. She’ll never forget what the neurologist told her: “You’ll see, when you go home, Anthony will not have changed; he’ll still be the same playful little boy he was before.” She hangs on to that statement. Then Anthony began to receive services from the Centre montérégien de réadaptation and from Ste-Justine UHC’s Marie Enfant Rehabilitation Centre. “The coordinator at Marie Enfant gave me the Muscular Dystrophy Canada registration form.” Carole registered Anthony and received an information kit. “There was a lot of information to take in and I didn’t have a lot of time… you have to do it gradually”, says Carole. She received an ergonomic chair through the technical aids loan program. Also, integrating at school isn’t always easy, even if Carole is very involved. Anthony has a hard time concentrating, keeping pace with the other students, running and jumping like his friends. If practicing sports is more difficult, Anthony loves math, reading and computer games. He’s a very tenacious little boy. Carole contacted us in September 2011 to ask us to come and meet with the students and teaching staff at Anthony’s school through our MuscleFacts awareness program for schools: “Thanks for being available and for visiting the La Pommeraie school. The feedback was very positive and Anthony was also very happy.” Although she was receiving support and services, Carole didn’t stop there. For years now, she’s been helping parents whose children were just diagnosed with Duchenne muscular dystrophy. She also helped create a Facebook page for parents. And since 2012, Carole and her team organize the Walk for Muscular Dystrophy in the Montérégie region.