A message for parents of children with Duchenne muscular dystrophy.
People with Duchenne muscular dystrophy can expect to live a great life full of family, friends and those they choose to spend with their time. They can expect to experience the good things in life and reach their goals and accomplish many things and not allow their physical limitations to hold them back.
The best way to quantify life is not through time; rather, it is what we do with the time given. Be there to support and encourage them to think big because, in truth, it is only our own minds that hold us back, not our bodies.
Do not think of Duchenne as a terminal illness that is leading toward an impending doom for your child. Thinking in these terms only limits life and prevents it from reaching its full potential. Instead, live by the day and make each day one worth living. “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
As an adult with Duchenne, we know that it causes great pain for a parent to watch their child struggling and to feel powerless to help them. You want to fix things that you are unable to fix. You want to take away our struggle and bear it for us. However, do not save us from living our lives. We are not broken or damaged goods. We are not fragile even though our bodies may be.
With every breath, we are living with Duchenne but it does not take away who we are unless we allow it.