On September 22, 2015 my husband Trevor and I sat in a room at Children’s Hospital of Philadelphia holding hands and praying that what so many doctors suspected wasn’t our reality. Unfortunately, all of our hope, prayers & positivity couldn’t change the fact that our 10 month old son, Trent, was about to be diagnosed with Duchenne Muscular Dystrophy. The words came out of the doctor’s mouth in what seemed like slow motion and the tears immediately starting flowing along with a feeling (an actual feeling) of my heart breaking into a million pieces. My breathing started to become panicked and I thought I was about to go into a complete state of shock. And then in an instant my husband grabbed my hand and my motherly instincts kicked in. The tears quickly subsided and I had questions- a lot of questions. I needed to know, what can I do for my son? How can I help him?
I decided (28 days later) that writing a blog might be something that can help me express my emotions, document our journey and maybe help others along the way.
If you are planning on following our fight against this horrible disease it’s probably best that I give you a quick summary of what it means to be diagnosed with DMD. Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year worldwide). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties. – See more at: http://www.parentprojectmd.org/site/PageServer?pagename=understand_about#.dpuf
Ok, now that you know what we are dealing with you can only imagine how devastating this news is to a family. Everything that we hoped, dreamed and envisioned for our son was quickly ripped from us with three words. In seconds we became overwhelmed with medical jargon and the idea of our son having a limit on his life. He has a long journey ahead and a lot to overcome and the diagnosis is grim. As a parent your mind starts racing and going places no parent’s mind should ever have to go and then you stop and look and realize that you have a beautiful, happy and seemingly healthy baby. When you look at him these thoughts don’t make any sense they seem unreal and impossible but that’s the nature of this terrible disease.
During our drive home, in-between the tears and hyperventilating, Trevor and I decided that we needed to do everything we could to make sure we continue to be the parents we always dreamed of being. We promised to be strong for our son and show him how much he is loved and cared for every day. Most importantly we promised ourselves that every good day Trent has will be a good day for us as well- he deserves all of his good days after all! We also immediately felt an intense need to hold onto the hope that there may be a way to beat this- science is a wonderful thing and there are many people who have dedicated their lives to try and find a way to cure this disease.
Hope is what we have and we are going to fight to help our son. We are going to educate ourselves. We are going to educate others. We are going to raise money. Raise awareness. Fund research. We are going to beat this. This is our battle to save our son. Follow along if you wish. It may not always be easy to read but I promise you that you will be inspired because this love we have for our little boy is a very powerful thing.