Today is World Duchenne Awareness Day. I’ll be honest…I am having a hard time right now. Maybe it’s because I have become connected to so many other DMD families and my heart breaks for their struggles. Knowing that without a cure, we too will walk the same path sooner rather than later.
Also, planning the Peyton’s Project fundraiser has taken a toll on me. It’s a lot of work for someone with a full-time job and 3 kids yet it’s one of the most important things in our lives. Time is not kind to the DMD community. DMD is also extremely expensive either causing financial difficulties in families or causing the kids to go without equipment and aids that would further their quality of life. For instance, a wheelchair can cost as much as a car. Then a special van is needed for transportation. Houses need to be modified to make them handicap accessible. Chair lifts are needed in 2 story houses. Actual body lifts are needed just to get your child out of bed and into the chair and vice versa. The list goes on and on and on. It’s overwhelming to say the least.
That is why we started Peyton’s Project. To help families obtain these items. We want kids to experience life. Not live on the outskirts watching others. Raising money, and a lot of it, is paramount to making this happen. I refuse to let Peyton fade into the background of life. His life has purpose and meaning.
On this day, please say a special prayer for Peyton and all the kids with DMD and the families that love them. We are distinctly aware of this disease every day.