Trina Stelly

Background

About Trina Stelly

Growing up, I never imagined I would become a patient advocate. I had no idea what it meant or entailed. I quickly learned when my middle son was diagnosed with Duchenne Muscular Dystrophy as a small child. Our world got turned upside down. Seemingly overnight I became a patient advocate without even knowing it. It started out very slowly and then it turned into my life’s mission. I was going to save my son and other children like him. The world stopped moving for a few days while we were in shock. I quickly figured out that moving forward I had 3 options. Option 1 was to give in, Option 2 was give up and Option 3 was to give it all I got.I started researching treatment options, cures and a local hospital that could treat my son.It was a shock to find out none of these things existed. I then found a few organizations that changed our lives. I suddenly became connected with families just like mine. These connections opened my world to comprehensive care clinics, clinical trials and patient advocacy. As the years went on, I was now not only a mom but a full-time care giver for my son. He required an extensive amount of help and care, but I still felt that I could do more for him. During this time period we learned that I was also affected by Duchenne and so was my young daughter. Finding out that you are females affected by a rare, male dominated genetic disorder is extremely difficult and heartbreaking. I had to work hard to prove this was an actual thing and women were truly suffering. I was going to be a voice for women with dystrophinopathy. I started researching and participating in all of the research studies that I could find to be able to provide important information that wasn’t out in the open because the data simply didn’t exist yet. At the end of 2021,I became a Community Ambassador for the Jett Foundation and help provide community outreach services. I also became a member of the Board of Directors for Families Helping Families of Acadiana. Our mission statement is to assist and strengthen individuals with disabilities and their families through a coordinated network of resources, services and supports. I have also assisted with a thesis paper discussing guidelines for both genetic counselors and families receiving a new DMD diagnosis. In 2022,I flew across the country to be one of the first patients at a comprehensive care clinic specific for women like me. I don’t do it for myself but for my daughter and other young women like her.I never wanted to be an advocate but I am so glad that I am.