Learning your child has a terminal illness is one of the most devastating things a parent can experience. I experienced that moment on October 26, 2005 when my 3-year-old son Devin was diagnosed with Duchenne muscular dystrophy (DMD), a rare genetic disorder characterized by progressive loss of muscle function. I’ll never forget hearing those dreaded words as the doctor read the genetic test results aloud. I was completely crushed. All the dreams I had for our lives together were suddenly placed in serious doubt. Instead of thinking about Devin growing up and having a family of his own someday, I was left wondering if he’d even live to see adulthood. The overwhelming fear of how the disease would progress and the toll it would take on my son left me feeling angry, anxious, depressed, and alone.
Personally, I didn’t immediately identify the need to connect with people facing similar circumstances. That misunderstanding may have been one of the reasons I had such a difficult time working through all the emotion I was experiencing. The generosity and compassion of family and friends helped me through many difficult days. Nevertheless, I felt like the challenge Devin and I were faced with was too unique for them to truly understand.
It seems natural for members of a community to join together to offer comfort, protection, and encouragement. The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to serving the rare disease community by identifying, treating, and curing rare disorders as well as providing programs of education, advocacy, research, and patient services. NORD’s slogan, “Alone we are rare. Together we are strong,” is an extremely powerful statement. We’d all benefit from an understanding of that absolute truth.
The Muscular Dystrophy Association (MDA) was there to offer their support to us in the hospital the very same day we received Devin’s DMD diagnosis. They’ve been by our side fighting this battle along with us since day one. The MDA knew the power of community and it wasn’t too long after we met that first day that the organization began inviting us to attend various events where we would meet other families living with muscular dystrophy. One of the first events I remember attending was a Halloween party they put together at a local public-school gymnasium. They had craft stations, games, prizes, and candy for all the children to enjoy. Many people fail to consider that children in wheelchairs can’t easily get around to go trick-or-treating with their friends on Halloween. Next time you walk through your neighborhood, take a look around at the number of houses with stairs up to the front door or even just one or two in the walkway. MDA clearly understood the problem and made a point to create a safe place where the children wouldn’t have to be concerned that they would encounter a situation that would prevent them from participating with their friends. MDA made a point to remove the limits that had inadvertently been placed on these children – just as they do each summer at camp. The organization quickly earned and secured my trust through their sincere compassion and understanding for all the “small things”.
The faith I put in the MDA allowed me to feel comfortable with other families involved with the organization. I slowly began to interact with other parents affected by muscle disease at these fun events put on for our children and as I did I began, I felt an undeniable sense of relief set in, even though I was finally confronting the reality of terminal disease and becoming more open about my family’s struggles with Duchenne muscular dystrophy. I started participating in MDA facilitated support groups because I knew how much of a difference getting to know some of the other parents had made in my life. I was even more amazed when a couple that I’d become friends with and whose son is also living with DMD, actually thanked me for inspiring them to enjoy life and remain hopeful. I believe it was the fact that they knew I could truly understand their thoughts and feelings, that allowed them to trust the thoughts I shared in our discussions. I’ve felt the desperation of living bound by a rare disease, but also the freedom of living confidently despite it. I’m beyond grateful for the opportunity to help other families understand what it means to “Live Unlimited”.
It’s been almost 13 years since I was introduced to a community of support through MDA and the families they serve. Although I didn’t recognize it right away, I can look back on it now knowing we were all led there because we needed the same thing – each other. I’ve become great friends with quite a few of the parents I’ve met in the MDA community as well as through other rare disease patient advocacy groups. The love and support we’ve shared over the years has been one of life’s greatest gifts. Sometimes I find myself thinking about how much my life has changed since I first met the MDA and the families they serve. I think it’s absolutely amazing to consider that ultimately, the same adversity that we though had broken us, united us.