This is a picture of our life before we knew anything about Duchenne..
When we found out we were having a boy, it was such joyous news! Our family started out early for Scott and I, as we had our daughter Chelsea at a young age, and she was nearly 13 when we decided it was time to grow our family. So, you can imagine, we were so excited! Braedan was born on September 28, 2005 and everything was wonderful. He was a happy baby, and seemed to hit all his milestones that they set for babies. However, when he started to walk he tended to walk on his toes. It didn’t seem to slow him down or seem to be painful, so we decided that he would just grow out of it in time. And the fact that our nephew was also a toe walker when he was younger and did grow out of it, seemed to make us believe that this was nothing to worry about. As Braedan grew older, he began to stumble more and more while walking so we grew concerned that there may be something wrong. We decided that he needed to be seem by a specialist and took him to see our families podiatrist. Our podiatrist, took x-rays and examined him and everything seemed to come back normal with his bones and feet. But our podiatrist, showed concern and advised that we go to a local neurologist to be examined further. He sent this doctor a letter with his concerns. So off we were to see the Neurologist, and at this point we were still thinking there is nothing really wrong with our son. He is fine… boy were we in for a rude awakening. After a series of tests in the office, gowers maneuver, and stretch tests the neurologists asked that our daughter accompany Braedan to the waiting room to discuss with us his concerns. He said that Braedan needed to have his CPK levels checked. He explained that CPK is the Creatine Kinase which is an enzyme that your body creates that lives in muscle. When they are normal, the levels are low, but when there is damage to the muscle they are very high. We needed to make sure that Braedan’s were low. He looked at me and said that something is going on with him, and we need to rule a few things out. So we left the office and went straight to the hospital. At this point we were growing very concerned for our son but couldn’t understand what it could be. The next morning, I received a call from the Doctor and was asked that we both come to his office to discuss the results as soon as we could. Scott and I both rushed to meet with him and that is when we were hit with the news that most families dread…. we were told that our son had Muscular Dystrophy. We didn’t know what it was, only heard of it through the Labor Day Telethon. And at this point we still did not know what kind of Muscular Dystrophy is was. He explained to us that it was one of the two kinds, Becker which is the milder form or Duchenne which is the worst of the two. He told us that we needed to go have a Genetic Test done to rule out which one it is. So we were left with our son has a disease that we know little about and are not sure which one he even has at this point. It took 6 weeks for us to get the results, and actually received the results. We asked him to call us as soon as he received the results and he did. I remember this like it was yesterday, pulling in the parking garage at the hospital hearing the Doctor on the other end tell me, “Mrs. Henegar I am so very sorry to tell you this but Braedan has Duchenne.” I was literally just struck by shock.. and fear for him. What does this mean for his life. There is no cure. And even though they told us not to look anything up on the internet, we did. So we read about this horrific muscle waster on line and we had never been so scared in our lives. We were then on to figuring out our steps to do everything possible to help our son. First was finding a Doctor that specializes in Duchenne. Our local Neuro did not specialize in this, but advised to another Doctor that specializes in Duchenne. So we went to the Doctor, and things went well there, but we wanted to make sure that we had the right Doctor so we sought out a few others until we felt was the best fit for Braedan. Right away, we got Braedan on Deflazacort a steroid to slow the progression. We were so hesitant on this because we were giving our son an oral drug. What if this drug gave him some other adverse effects that we will have to deal with too. But this was our only hope to slow down duchenne at this point. We started to see it help him within a few months and he has been on it since. He takes 15 mg. once daily on a weekly regimen and we crush it and put it in vanilla yogurt every morning. Along with his steroid he takes a multi vitamin, vitamin D3 and CoQ10 and lisinopril for his heart. Braedan has been seeing a Physical Therapist since the beginning of his diagnosis and an Occupational Therapist as well. He has a special connection with his PT, and we are so thankful for that. It has been a struggling road already, but we have decided to take one day at a time. We also have been swimming inside a heated pool twice a week at a local resort that a friend has so generously arranged for us. Braedan is also set up through school on a IEP program and they have been so great at working with us and his needs. Throughout the summer Braedan is actively involved with a therapeutic horse back riding program with his therapist call Hippo Therapy. He loves riding horses too. He rides the Biggest horse, which is a draft horse named Daisy. He understands the difference. Two years ago, we decided that we needed to step up and do something BIG to make a difference. We started an annual event called All in for Duchenne to raise funds that we can put directly on a trial that will help find a cure for Duchenne. Please check out the page on our site for more information or how you can help out. Our family sincerely thanks you for viewing our site and hopes that you will find it in your heart to help support us and share out story with others.
