When a life alternating disease like Duchenne enters into your home it feels like your life stops while everyone else’s keeps going. I have learned that when it comes down to it, health, joy, and living a life with purpose are all the things that really matter.
The day we received our son Conner’s diagnosis, we were completely devasted. I never thought I’d quite recover from that hopeless feeling. Our hopes and dreams for Conner constantly flashed by and there seemed to be no way out of our sadness. We were brought to our knees. While our faith may be big, we found ourselves in some of the darkest places of our lives. We realized after months of grieving, that we needed to take action not only for Conner’s life but for the sake of our young family.
We began searching for clinical trials that fit Conner’s profile. Many felt out of our reach. We were looking for anything to extend his runway. There were options, which was a good thing but not knowing which trial to become involved with was very stressful.
The doctor appointments, procedures, and preparation for travel to various sites are all exhausting, and all you want to do is switch places with your innocent son. We realized that we would take anything that would slow down the progression of this monstrous disease. We knew that time was against us and Conner needed a lifeboat. Weighing risks and benefits became second nature.