Our grandson was diagnosed with a life threatening disorder
18 years ago our family became aware that our grandson was diagnosed with a life threatening disorder. I had always felt compassion for others who were less fortunate health wise, but now, it was our family who was experiencing a personal crisis. I realized that it had been an innocent way of living. Tragedy can strike at any time and no one is immune.
I sought to find out everything I could about Duchenne Muscular Dystrophy, so we could better understand what was happening to our grandson and what we could do to help our daughter and her family.
Many people know of Muscular Dystrophy through the Jerry Lewis Telethon. However, families with a child who has the disorder, know it as a very debilitating disorder that requires countless hours of physical and emotional support of their child.. There was also a realization that there was a requirement for costly equipment that dramatically assists with his support. Expensive equipment is needed for a person to eat, sleep, bath and breath.
Through a program with Muscular Dystrophy Canada, families are able to have their lives supported through ceiling lifts, tilt back wheelchairs and many other valuable pieces of equipment.
I became an active volunteer with Muscular Dystrophy Canada and President of the London, Ontario Chapter because of Jason for this vey reason. The volunteer work was an activity of enjoyment but came with a challenge to find finances for much needed equipment. It also supported me emotionally as there were many people in the chapter who were experiencing, or have experienced the very same situation our family was going through.
It is very time consuming to support a person with a disability and I am in awe of each and every one of of those people as they are true heroes in our society. They provide loving support of their children and treat every moment so preciously.