We recently asked the Family Advisors from the DuchenneConnect Registry to write a blog about things they think are important. Here is Margie Heger's story:
I only wish Duchenne Connect was around 20 years ago when my son was diagnosed. Witnessing the recent exciting scientific breakthroughs that put our sons on the cusp of revolutionary treatment, warms my heart.
Newly diagnosed parents, I refer to them as parents because this disease affects the entire family, should consider themselves lucky in one respect. And trust me, I know it doesn’t feel like you are lucky in any respect.... But the current aggressive race to treat our boys is an endeavor older parents like us have been praying years for. Other than Labor Day’s Jerry Lewis Telethon one day a year, DMD and BMD have not been given any attention and in fact it continues to be confused with MS!
I am the mother of a 23 year old man with DMD. While life holds many challenges, I pray my son, and family, continues to accept those challenges and live a productive and enriched life. I am thrilled to sit on the parent advisory board of Duchenne Connect where we discuss many topics that not only serve to reach out to families suffering from this devastating diagnosis, but also to prioritize topics to help further scientific research efforts. Through my son’s registration in Duchenne Connect, he has already been invited to participate in several studies that hope to impact our community.
When your son is delivered this kind of diagnosis it is easy to feel lost and disoriented. So much to deal with. You google, pray, and rely on your son’s doctor to notify you of a treatment when and if it becomes available. Trouble is, your son’s doctor has hundreds of other patients and does not keep updated on current strategies directed at your son’s care. That’s why registering for Duchenne Connect is a necessity. Once your son’s data is entered, and periodically updated, you are alerted when a study or information pertinent to his deletion is being conducted.
Let’s face it. We have to be our children’s advocates. We have to keep our eyes and ears open at all times so as to keep up with all the changes in their little bodies. For me, Duchenne Connect helps me feel a little less helpless in the battle against this disease. Assisting in studies and current research that hopes to ultimately improve the lives and advance the treatments for our boys is invaluable. Most importantly, getting feedback about the Duchenne community and feeling connected with others makes me feel less lost and alone. Every family should get connected.