Cure Duchenne Family of the Month August

The Henegar Family Chelsea, Scott, Braedan and Tammy Henegar (left to right). In many ways Braedan Henegar, 6, is a typical first-grade boy. He loves the outdoors, animals and enjoys playing with his family’s four dogs. He is a Sprint Car Racing fan and enjoys going to the track to watch. Braedan is active and likes to swim, ride his bike and play t-ball. What isn’t so typical is that when Braedan turned 5 he was diagnosed with Duchenne. Now his parents have to balance his natural activeness with a new daily routine that involves living with the disease. “I want him to be able to be an active boy and experience everything boys like to do, but we always have to be aware of what he is doing and think about if he is being too harsh on his muscles,” said Tammy Henegar, Braedan’s mom. “It is a huge struggle to have the right balance.” Braedan’s routine has changed. It now includes daily stretches and physical and occupational therapy. The Henegar’s watch what Breadan eats and limit his salt and sugar intake. Rather than going to the neighborhood school he goes to a school that is 15 miles away because it is all on one level. Braedan knows that his muscles are different than other children. He tires out sooner and his muscles ache. He is starting to ask more questions. “Right now Braedan is doing really well,” said Henegar. “We will continue to stay up with the latest research and keep him as mobile as long as possible until there is a cure.” Henegar has been a big supporter of CureDuchenne and other Duchenne organizations. In April, she hosted a parent outreach session for more than 40 people in Perrysburg, Ohio. In July, Braedan participated in the Wooden Bat Tournament in Dayton that benefited CureDuchenne. Braedan is a huge Clay Matthews fan, even before finding out the connection with CureDuchenne. Matthews, a linebacker for the Green Bay Packers, is a CureDuchenne spokesperson. “Even though we are taking this journey through life that we never thought we would be traveling down, it is bitter sweet,” said Henegar. “We are having new experiences and are meeting wonderful people such as everyone at CureDuchenne, and all the other families we have met and became close too. We’ll continue to work tirelessly to help raise awareness and funds to find a cure.”