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WalkHi , we are the Mombourquette Family from Lantz, Nova Scotia.

We are happy to be the Ambassador family for the 2016 Halifax Walk for Muscular Dystrophy. My wife, Collene and I have 7 children- 5 boys and 2 girls age 10 to 24 years old of which 2 of the boys have disabilities. Trent, age 21 has Downs’s syndrome and our youngest, Trevor has Duchenne Muscular Dystrophy (DMD). Neither of our families have any history of either of these conditions so as a doctor put it, “We were struck by lightning twice”.

Well, in fact DMD  the most severe form of MD strikes much more frequently than lightening, affecting approximately 1 in every 3500 boys born.  Trevor’s DMD was caused by a new mutation which can randomly affect any child for reasons yet unknown.

As with many people, we did not know what MD was until Trevor was diagnosed at age 15 months. Most children are only diagnosed at a later age but because Trevor had a twin sister and we had 5 previous children we noticed he was having trouble with some of his movements. We didn’t think there was anything seriously wrong but we were in for the second shock of our lives when we received the diagnosis. Like many boys with DMD Trevor also has a moderate intellectual disability. This, combined with his physical disability, makes it difficult for him to form close friendships as the gap between him and his peers keeps growing.

Trevor tries harder and has more determination than most and does not give up easily. His most common saying is “Don’t help me, I can do it.” Hopefully it is this determination that will help him in the future,  however, it will only bring him so far, such as when he was trying to learn to skate. We have a  small pond in our backyard and every day Trevor would want to put on the skates and he would try to  skate like his sister and other kids on the ice. Day after day he would try and I think that he thought that if he kept trying that he would be able to skate, not realizing that his body would not let him do what his mind wanted him to do. Finally, one day he sat down on the ice and cried, saying, “Why can’t I learn to skate.” It really hit me that this is just one of many heartbreaks and disappointments he will have in his life. Now as he watches his twin sister play hockey he has a smile on his face and as he turns and looks at me,  I can see the in his eyes the wish that he too could be on that ice. What he would give to be able to just once skate around the rink and feel the breeze on his face. A teardrop hits the keyboard as I type this and wish I could trade places and give him my muscles. I cry not for me but for Trevor for all the things he will never be able to do and for the things he will soon not be able to do anymore as the disease gradually reduces his ability no matter how hard he tries.

You never thought that you would outlive your children but with Trevor this is a strong possibility as the average lifespan of children with DMD is late teens or early twenties. At some point in everyday you have sad times as you see his mobility deteriorate and which you are powerless to reverse .You realize how trivial most of our problems of daily life are as you see Trevor struggle with many of the things we take for granted like putting on your socks or standing up from a sitting position. You understand that for Trevor to enjoy life he will have to concentrate on what he can do and not what he can’t, which is easier said than done. Life is unfair but you must get the most out of the life that you have been given.

Trevor gets out on the ice twice a week playing sledge hockey which he looks forward to each week. He also loves to swim and to play outside or go for short walks in the woods. He tries to do as much as he can while he still can. Trevor is lucky to be surrounded by a loving family and hopefully it will be this love that will help him enjoy precious life and endure what is in store for him. As the renowned physicist Stephen Hawking said, “Although I cannot physically move and I speak through a computer; in my mind I am free.” Hopefully; in his mind,Trevor will be able to be “free”.

The Walk for Muscular Dystrophy is important as it raises not only funds and awareness but also enables the participants to build connections with others who understand the effects of living with MD. They realize they are not alone. MD is not as common as many other diseases and therefore not as many drug companies work towards a cure because of the smaller potential market. Contributions towards the walk funds research, equipment and technology. I hope that Trevor’s story will motivate people to help in whatever way they can  because it is not a matter of “can” a cure be found but “when” will a cure be found so that  the frustrations and disappointments of all the “Trevors” in the world will disappear.

Please give your support to the walk.

Paul Mombourquette

 

Find your local Walk for Muscular Dystrophy event by visiting www.walk4md.com

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