Awareness 2015: Be Inspired
September is Muscular Dystrophy Awareness Month! Here we are going to highlight some of our wonderful Walk for Muscular Dystrophy Ambassadors:
Guinevere (Gwen) Warner is a sixteen year old girl with congenital myotonic muscular dystrophy. Gwen was born a couple of months too early, and was unable to breathe on her own at birth. She spent three and a half months on a respirator, and her first eight months living in the NICU at RUH Saskatoon, and she was not “supposed” to ever leave the hospital. At the time, we were told she was the “most severely afflicted child they’d seen who’d lived”.
Gwen’s had many difficulties and challenges in her life, but despite all of that Gwen is a very happy girl. She gives us reasons everyday to appreciate life. She shows us lots of smiles, and gives us lots and lots of hugs and kisses. It’s easy to spoil her because she’s such a loving kid. We home school Gwen, and just like other young kids, Gwen is learning about sharing. So there will be a sharing time when Gwen has to tolerate other family members using the television as well. Which is asking a lot, because watching Netflix is one of Gwen’s biggest sources of happiness. She loves watching Dora the Explorer, Barney, Angelina Ballerina and Leap Frog. But Dora’s Fairy Tale Adventure, in which Dora needs to turn into a True Princess to save her friend Boots by giving him “the biggest hug ever” is her all time favourite. We’re pretty sure that Gwen thinks she’s a True Princess too, and we don’t disagree! When it’s sharing time and it’s her siblings turn to watch, Gwen’s learned that it’s usually pretty easy to get a few minutes more of Dora by demonstrating “the biggest hug ever” on them!
Gwen doesn’t speak, but she is learning to communicate by using an app called Proloquo2Go on her iPad. Once in awhile, she will surprise us by spontaneously saying something using her iPad. We especially love to hear her say “I LOVE YOU”, “LET’S TALK”, “THIS IS FUN” OR “I WANT TO READ”. Simple words, but for us it’s music to our ears. Gwen was a teenager before we heard her say ‘I love you’ for the first time, so it’s a special blessing every time she communicates with us. She’s been learning how to use her app for three years now, and this year she is really making great progress using her iPad to communicate with us.
Before we were given a “special child”, we never knew what a blessing it would be to have Gwen given to us to love and care for, and to be loved by. Gwen truly is a “teacher of love”, and she enlightens our world and blesses our lives with her presence in them.
- Gwen Warner, Prince Albert, Saskatchewan
My name is Alexander and I have Duchenne Muscular Dystrophy. I was really young when I was diagnosed. I had an older brother Andrew who also had Duchenne Muscular Dystrophy. He passed away on New Years 2004.
It is really important to me spread awareness as it helps others understand my disorder. I hope that with research, they will soon discover a cure for Duchennes.
-Alexander McCormack, Burnaby, British Columbia
My name is Olivia. Although I have a neuromuscular disease that I can barely say, I am a very energetic 6 year old with big dreams! I told my parents that I want to be a ballerina and a veterinarian when I grow up. I love all kinds of animals and want to be a special doctor. I also love dancing, singing and playing with my friends. So far, nothing has stopped me from trying all the things I want to learn to do. This spring I even started playing wheelchair basketball and scored my first basket! I won a medal and took it to school to show my teacher and friends!
Some days my legs hurt and they don’t work the way I want them to. I often don’t keep up to the other kids, so it makes things harder for me to do but my friends always stop to help me so I can keep on playing with them. It’s hard not to trip and fall all the time, or ride a bike, or even learn to swim, but I have lots of help from people who care about me and I always try really hard when they help me.
It took me a long time to say Charcot-Marie-Tooth Syndrome (that’s what my disease is called), and my parents would giggle when I’d say it wrong. I am lucky that my disease does not make me have to use a wheelchair yet. I can still walk, run and chase after my dog. My mom and dad even have to tell me to slow down sometimes. I always like to try new things and see what I can do. I have tried belly dancing, swimming, music lessons, and more but the most favorite thing I get to do is ride my horse. His name is Blaze and he is one of my best friends. I always get to give him a carrot at the end of my lesson because he doesn’t like to eat apples! He is a great horse and also has a disability like me. We love each other a lot.
- Olivia, Saskatoon, Saskatchewan
I’m Cody, I’m 26 years old and live with Duchenne Muscular Dystrophy which is a neuromuscular disorder that affects the muscles in your body and progressively makes them weaker. I was diagnosed at age 4 and had the ability to walk up until about Grade 2. My leg muscles were getting tired fairly easy so we decided a manual wheelchair would give me a better quality of life. By Grade 4, I was in a power chair as getting around was becoming harder and I wasn’t able to keep up with my friends.
For the most part I live a fairly normal life and not much stops me! I use a wheelchair van equipped with a lift and ramps built on my house. On November 17th 2010 I was brought into the Dartmouth General Hospital with pneumonia and a blood infection. I got out of hospital at the end of February, 2011 and because of the pneumonia I needed a trache and a feeding tube. I still have both to this day but I have been healthy ever since. I can no longer lift my arms up but I do almost anything everybody else does.
Of course there are times I’d like to be able to walk but for the most part I don’t even think about having a disability.
I support and believe in the wonderful people of Muscular Dystrophy Canada because they are getting awareness out into the community and providing a lot of hope to everybody affected by providing information, education and raising lots of money for equipment and hopefully one day perhaps even a cure.
-Cody Rodgers, Halifax, Nova Scotia
Parker was born on September 5, 2002. Healthy and happy baby boy. Within a few months we noticed that Parker was unable to sit up on his own and his head always wanted to flop. He underwent a series of testing and the end result was a diagnosis of Spinal Muscular Atrophy type 2. He was 10 months old at the time of diagnosis.
Raising awareness for muscular dystrophy is very important to us because we want to help find a cure and help raise money for equipment for people and families in the same position.
- Parker Kelly, Simcoe, Ontario
Cayden was born on February 15, 2013 in Brandon, Manitoba. Immediately after his birth, he was rushed to the NICU with breathing and cardiac issues and later experienced feeding difficulties. He was placed on a ventilator for a few days and was given caffeine to prevent his heartfrom spontaneously stopping. After 26 days in the NICU, we were finally able to take our baby home. In April, we went to see a genetic doctor in Winnipeg. Cayden was diagnosed with Congenital Myotonic Dystrophy. We remember that day like it was yesterday,and I am sure it is a day that has been forever engrained into our memory which we will never be able to forget even if we wanted to.
Since Myotonic Dystrophy is a geneticdisorder, the doctor conducted a blood test on me as well and to our surprise, I was also diagnosed with Myotonic Dystrophy. Mine, of course, is a lot less severe than Cayden’s as it was never picked up before.
At first, when we originally were just diagnosed, I thought that if I didn’t tell anyone, no one had to know and if no one knew then nothing was wrong. We could just continue on with life as if there had been no diagnosis. But as time went on, I realized that pretending that nothing was wrong was not in the best interest of my child. We had to come to terms with what Cayden hadand do everything possible to help Cayden reach his full potential and to beable to function in life as best as he could. Essentially, we wanted him to beable to do all the things every other kid does.
Of course, Cayden cannot yet do all the things every other kid his age does but we are certain he will get there in his own time. At this time he is unable to stand, crawl, walk or talk. However, we are involved with numerous doctors and therapist all who have dramatically helped him develop and make progress. They may be small accomplishments to some but to us they are huge! At this time last year, Cayden was not able to move to all. Now he is bum-scooting all over the living room floor and getting into everything he shouldn’t begetting into just like every other kid his age. Cayden enjoys the same activities that other kids his age enjoy. He likes playing with his toys, listening and occasionally dancing to music, going shopping, going for walks and readingbooks.He also likes to go for car rides which is a good thing since we have to travel to Winnipeg quite often to see some of the doctors, therapists, and specialists who are involved in Cayden’s care.
- Cayden, Brandon, Manitoba
Hi there, my name is Jeff Poirier. I am a 31 year old newlywed living in Stratford, PEI with my new wife. I have a rare progressive, neuromuscular disease known as Friedrich’s Ataxia which affects approx. 1 in 50,000 people in the general population. This disease affects the body’s nervous system resulting in a deterioration of muscle bass, disruption of balance, hand-eye coordination, reaction time and processing speed. It can also lead to diabetes and heart disease. At 12 years old, I watched my older brother struggle with his diagnosis, not knowing whether I would face the same fate. I was then diagnosed at 16 years old, and confined to a wheelchair two years later. I can definitely notice the progression but do my best to continue to train my body to do what it can, for as long as I’m able.
My favorite way to raise awareness is by simply talking to people about muscular dystrophy, remaining open and honest to any questions they may have and showing the world that although I may be living with this disease, it does not run my life. Of course there are days when I wish that I did not have Friedrich’s, however I have been blessed with many things and the struggles I’ve faced have only made me stronger, showing me how valuable life is.
- Jeff Poirier, Charlottetown, Prince Edward Island
William was diagnosed with Duchenne muscular dystrophy at 5 months, which is very rare. We found out when he was being treated for an unrelated issue. Our Family needed support and a place to turn to for information. We learned so much of what Muscular Dystrophy Canada has to offer. It was amazing to know that they provide support, research, financial assistance with equipment and best of all they offered a Muscle Facts Presentation at William’s school.
- William Lazaruk, Sarnia, Ontario
Jenny is 11 years old and is in grade 5. She loves going to school, singing, dancing and making crafts. Jenny was diagnosed with spinal muscular atrophy as a toddler and she has not let that slow her down one bit.
Muscular Dystrophy Canada has been a great resource for our family. Not only have they been able to provide financial assistance toward the purchase of several pieces of equipment required to care for Jenny, they continue to provide educational and emotional support to our family. It is nice to know that we are not alone in this journey.
Know that every dollar that you donate to this awesome organization helps families like ours and that we appreciate it from the bottom of our hearts.
-Jenny Larocque, Northern New Brunswick
To read more about Walk for Muscular Dystrophy Ambassadors, please click here.