I have a picture of Matthew and Patrick at my desk at work taken about three years ago when Patrick was still able to walk. Patrick is standing and leaning against Matthew who is sitting in his power chair. Patrick's arm is around Matthew's shoulder and they are both smiling. The look on Patrick's face is self assured, almost protective, and Matthew looks relaxed and happy next to his brother. The photo reminds me of how much my sons help each other and depend on each other for support.
Matthew has depended on Patrick for physical help for a long time. When Patrick was walking he often picked up dropped items for Matthew or brought him his Game Boy or other item when asked. Even today Patrick has much upper body strength despite no longer being able to walk. He is able to retrieve things for Matthew, changes the video games they play together and helps him with lunch when needed. Matthew is a great older brother and being two years older provides Patrick advice about what to expect with the next grade at school, what he knows about the teachers and other important issues. Patrick isn't ready for girls, yet I know once that happens Matthew is prepared to give him a crash course. Sure they have their squabbles, but most of the time they get along fine. They demonstrate how well they cope with their challenges by soldiering on every day and do so as a team. My sons are able to see the big picture and realize helping each other is mutually beneficial.
The way my sons help each other also makes me think about the larger DMD community and the need for us to help each other. I see families reaching out to one another offering advice based on their personal experiences. The internet has provided families a resource to communicate with others and learn so much. When Matthew and Patrick were diagnosed twelve years ago most health sites were very basic and communication was difficult. Fortunately advances have been made and communication is much easier. Sometimes in our zeal to help others we may come across too strong advocating for or against a particular issue, yet the intention is to create a much needed family support system. We all have something to offer and their are also times we need someone to listen or have a concern we need to voice. Fortunately we have an organization like PPMD that provides us with the resources to find one another and create our family safety nets. Still, our need goes beyond our own child and coping with DMD. Our big picture includes improved therapies and an end to Duchenne.
In order for us to be successful the arrangement cannot be one way. Just as my sons help each other in the ways they are able, as a community we need to give back where we can. Certainly one important area many of us can help with is fund raising. Realizing each of us comes from different backgrounds and circumstances what we are able to do will vary. Regardless, we all should be doing something. Only a small fraction of families raise money for DMD and organizations like PPMD, but we can change this. There are many ways to raise money and we all know every dollar counts which should motivate us all to do something to help our sons.
Another subject that is of equal importance is supporting programs that will in turn help our sons. Researchers and clinicians need data to help them decide the relevance or efficacy for current and potential therapeutics. Clinicians need evidence of how well current and newer therapies impact the progression of DMD before adding to a patient's protocol. Researchers also want information about the population to support their concepts and methodology for new therapies. One way to support this effort is by participating in the DuchenneConnect registry (https://www.duchenneconnect.org
). The registry is a wonderful tool that collects patient information and serves as a data base for professionals working to change the natural history of DMD. New elements are being added to the registry to collect more meaningful information. Families and individuals living with DMD need to keep their information up to date and this requires time and commitment. Additionally, as research moves from laboratories to clinical trials a robust data base will help trial directors determine where sufficient patients reside. Without this information justifying trials on the possibility an adequate number of patients may be found easily could result in delays and in trials being held in other regions or countries.
Having both of our sons affected by DMD is not easy for my wife Alice and me. Matthew and Patrick's ability to help one another is one redeeming aspect. We have always insisted our sons advocate for themselves appropriately which may be one of the reasons they work together so well. This cooperation is vital for the larger DMD community and it begins with recognizing the need to be involved and acting on that need.