Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. This page is dedicated to Tyler and his journey with Duchenne Muscular Dystrophy (DMD). The biggest genetic killer of children worldwide. Thank you for visiting.
Tyler was diagnosed with DMD on April 15th of 2015. He was just at the tender age of 3. Unfortunately, we were already familiar with this horrific disease as Tyler's uncle passed in 2005 from DMD. Duchenne is the most severe form of muscle dystrophies. This progressive disease causes your muscles to breakdown starting with your core muscles. Most boys are in a wheel chair between 10-12 years old. This disease knows no boundaries and will continue onto their heart and lungs as well. DMD will result in 1 out of 3,500 male live births. It not only can be genetically carried but also of spontaneous mutation. Roughly, 30% of those with DMD are caused spontaneous mutation. Which means anyone can be affected by it. It does not have to be passed down by family. In our case, it was hereditary as I am a carrier. DMD primarily affects males but can affect girls; however, it not as common or as severe as it is with boys. There currently is no cure for DMD or a treatment available for my son. We need to find a cure for all those affected by this disease!
At the present time, Tyler is in really good health and is still gaining muscle strength. He is not presenting any major symptoms of DMD. We have him in aquatic therapy, physical therapy, occupational therapy and speech at this time. We have started interventions such as stretching him nightly, the use of afos, and steroids daily to help with muscle integrity. We are in the 100% muscle preservation mode, but still allow him to be a wild and crazy boy. He is a very curious boy that loves to explore new things. This is a fatal and very progressive muscle disease. We realize that time is not on our side but choose to live life as best as we can. Anything we can do to push off the inevitable is what we are dedicated to doing.
This has been a really long journey from getting his diagnosis to transitioning into our new normal. Knowing that I was a carrier, we have always been suspicious of DMD. Since he was born, we have asked every doctor to assess him and look for signs. We were shot down every time despite our family history. No one would even give him a simple CK test or even listen to our concerns. It was not until he was 3 when we received the devastating news. Our world was completely turned upside down and has never been the same since. You never really recover from that kind of news about your child. Our happiness has never been the same since April 15th, 2015 - the day he was diagnosed.
After the dust settled and the initial shock, we were determined to find help to save our son. Through our research and networking with other DMD parents, we found out about Dr. Flanigan at Nationwide Children's Hospital and his research and potential treatment for Tyler's exact mutation, duplication of exon 2. We have been working closely with Dr. Flanigan with the hope of his treatment going into clinical trial.
This is the beginning of our journey, and we thank you so much for taking the time to visit our page and learn about Tyler and Duchenne Muscular Dystrophy.