I will never forget the first time I heard the words, “David has Duchenne muscular dystrophy”. As his big sister, it was – and always will be – my job to protect David. But, even at nine years old, I knew I was no match for Duchenne. However, that didn’t mean I was ready to give up, and I promised myself – and my little brother – when I grew up, I would try to rid the world of this life-altering disease.
Unfortunately, while I grew up and enjoyed all the best parts of childhood, David’s disease progressed too. Little by little, as he lost his strength, my big sister duties increased. It started out with giving him piggy-back rides when his legs were tired or helping him get back in bed after he needed to use the bathroom.
It wasn’t long before I was watching my best friend, playmate, and baby brother lose his ability to walk and do the things many kids take for granted. Long before his time, he was in a wheelchair and needed more help than ever. Through all these things, my determination to make a difference in the lives of boys and families battling Duchenne grew stronger.
Thanks to supporters, like you, I am more optimistic than ever about the potential of curing Duchenne. But, I am also realistic about the distance we still need to go to help young men live more fully with Duchenne. As a Molecular Biology and Biotechnology student, I am already living a small part of my commitment to save my little brother by deepening my understanding of the genetic processes that result in Duchenne.
I work with researchers to develop therapeutic strategies in cutting-edge laboratories and have had the privilege of witnessing promising clinical trials. While attending medical conferences, working at pediatric hospitals and meeting patient-family advocates continues to increase my hope for a future free from Duchenne, I know these leaps and bounds can only take us so far.
Enthusiasm, hard work and the wonders of science can, unfortunately, all be stifled if there are not enough funds to support them. I need you to help me ensure that, in the future, big sisters will get to carry their brothers for fun – not because they can’t keep up anymore.
Your generosity is going to change difficult memories into great ones by removing barriers to therapeutic treatments. I can’t say enough how much I appreciate your willingness to put yourself in my family’s shoes. By walking with us on this complicated journey, you’re showing young men across the country that they don’t have to suffer alone.
Together, we will make a difference that can change the face of this crippling and heartbreaking disease.
Rebekah Kember (David’s sister)