Duchenne Muscular Dystrophy (DMD) is a fatal genetic disorder that affects one in 3,500 boys. DMD is caused by a genetic mutation in the gene that encodes dystrophin. Because dystrophin is missing, the muscle cells are damaged, causing muscle weakness and leading to issues with the heart and lungs. Boys with DMD generally live into their late teens or early twenties. Although there is currently no cure available for DMD, scientists have made progress on many fronts. Doctors are currently working on improving muscle and joint function, and are slowing muscle deterioration. However, more research is needed in order to find a cure for this devastating disease.
John and Sherene Davidson created the Jesse Davidson Endowment when they discovered that their son Jesse had DMD, making it their goal to find a cure. Unfortunately, Jesse past away at the age of 29 due to complications caused from his battle with DMD. Jesse’s Journey is a form of hope for many families that have the daily struggles of having a child with DMD and they have become something very dear to my heart.
For the past two years I have taken part in the Jesse’s Journey “Walk Across Canada in a Day” in London because someone I care about has DMD. When I met Steven three years ago I knew very little about DMD and had no idea how difficult daily life was for a family with a child that the disease. I have found a group of Trent students that are willing to help leave a legacy at Trent University and help raise awareness for the disease and help to find a cure.
A boy with muscular dystrophy struggles daily to do tasks that we all take for granted. By the time many boys with DMD enter their late teens they need help with everything from brushing their teeth and getting ready, to going to school and eating. Having experienced the amount of help that these boys need on a daily basis makes you realize how much we take for granted. When I met Steven, who suffers from DMD, I was not sure what I was in for; I didn’t know a lot about the disease and I had no idea how to help. But Steven let me know what to do and what not to do. He has an amazing outlook on life and is the most positive person I’ve ever met. He makes outrageous comments at awkward times and he might embarrass you in front of the family at Christmas dinner, but everyone knows it’s in good fun. No matter what, he will always make you laugh in the process. Steven is 18, finishing up high school, and having a great time in life. He does have daily struggles, and it’s hard for him and his family to do what a lot of families see as normal activities, but he never seems to let that get in his way.
I have never met anyone like Steven, and knowing that medication will slow down the muscle deterioration isn’t enough. No parent should outlive their child, and a cure is the only thing that is going to change this for Steven. So, please help us.
On Monday, April 1 you can find a donation box in the Business Administration Office with Marion Norman. We will also be distributing lime green ribbons on campus for a donation of your choice. Please show your support and help us bring awareness of DMD to the Trent and Peterborough community.
On Saturday, April 6 from 1:00 p.m. to 5:00 p.m. we will be holding a walk-a-thon in the Trent University Athletics Centre to help raise awareness and funds for Jesse’s Journey. Please come out and help us find a cure. Stand up for the warriors, honour the fallen, and support the families.
Find more information on the walk-a-thon on our Facebook event page: “When People Work Together Miracles Can Happen!”