Guest blog by Tammy and Scott Henegar
Our family’s journey with Duchenne muscular dystrophy started in March 2011 when our 4 ½ year old adventurous and sweet young boy was diagnosed with the heart breaking diagnosis that no parent should have to face. We were told that Braedan would be facing a life of falling, losing ambulation, tons of medicine to hopefully prolong things, machines to help him live and the worse a shortened life span.
We learned that Braedan’s form of Duchenne was that of a duplication, which is only in a percentage of approximately 11% of all cases of Duchenne. We were devastated like all families giving this news. But looking into the eyes of our young boy that solely relied on us, we knew we had only one choice and that was to start living our lives to the fullest that we have with him each and every day and not give up HOPE and FAITH.
As a family, our faith has grown and our love for each other has gotten stronger. We no longer look at things as we did before, as there is such a bigger picture of importance in life. We started to really live our lives. One of our goals is that we want to show Braedan the world and try to give him all the experiences he wants in life. We have been to 33 states seeing such beautiful areas in this country and continue on with that adventure. In 2015, Braedan was granted his Make a Wish, and that was to travel to South Africa. Simply amazing memories that we cherish every day! Braedan has also taken an interest in hunting, and has been on some incredibly amazing hunts in the past two years with more to come. We give such thanks to the outdoor community for embracing him in their hearts and we continue to feel blessed by this. He is truly embracing this also as he has commented that he hates having Duchenne but also loves it for if he didn’t have it, he wouldn’t be meeting all these wonderful people. He has grown so much spiritually, and we are so incredibly proud of him.
Five years ago, we decided that we would do everything that we can to raise awareness and funding to help fund clinical drug trials to find a way to alter the path way of destruction this disease continues to make in patients with Duchenne. We formed our Foundation called Braedan’s Bridge, with our theme of “Building a Bridge over Duchenne” and started by raising funds with small charity events in our area doing what we could. We decided about four years ago that we needed to do something BIG! So we started an event that we call “All in for Duchenne” to benefit CureDuchenne
Proceeds of the event have helped fund duplication research by Dr. Kevin Flanigan at Nationwide Children’s Hospital. CureDuchenne recognized early on the importance of funding duplication and rare mutations to help find treatments for all those with Duchenne. Over the last few years CureDuchenne has contributed more than $1 million to enable Dr. Flanigan to progress with his innovative work on duplication mutations.
All in for Duchenne entertains a dinner/reverse raffle with auction items, games and entertaining fun throughout the evening that has grown to more than 300 guests in attendance. Our guests attend casually wearing their favorite sports team apparel, enjoy a great dinner, drinks, music and each other’s company while playing many games and bidding on great auction items throughout the evening taking a chance in winning BIG at the end of the evening in our Reverse Raffle. Our 4th Annual All in for Duchenne is approaching this October 15th, and it is sure to be bigger than ever! We appreciate all the support in our community for attending and welcome anyone that would like to attend.