August 8, 2011 was the day we first heard the word Duchenne. Every moment of that day is etched in my memory. We were hit out of the blue with the news -with no idea that our perfect little boy had a storm brewing inside of him. We were told there was no hope and nothing we could do, so just accept it and enjoy the time you have with your son. We spent the next several months in a daze. Thinking about all the hopes and dreams we had for Henry – and our family in general – and mourning the loss of that life. We didn’t know anything about Duchenne and felt isolated that there was no one we could turn to, other than the doctors or the internet for advice, inspiration, or most importantly, HOPE.
About a year into our journey, we found CureDuchenne and made a connection with Debra & Paul Miller, and their son, Hawken. Here were two parents, who like us, did not want to accept the answer that ‘there was nothing we could do.’ They started CureDuchenne to do something. And that something has been affecting change in the world of Duchenne! CureDuchenne has a team of experts including physicians, scientists, physical therapists and more dedicated to finding the best potential treatments out there and actually working to fund the research and approvals! It has been amazing to see the progress made in the four short years our family has been involved with CureDuchenne – last Fall the first treatment ever for Duchenne was finally approved!! Our family has felt like we’ve had a hand in getting these treatments moved forward by our involvement fundraising, advocating and sharing our journey with other Duchenne families as well as industry experts.
In addition to the medical aspect of the disease, CureDuchenne has also hosted several workshops that have been invaluable in providing knowledge on the care, treatment and future of our son, but, even more importantly, has enabled us to spend time with other Duchenne families. Together the laughter, tears and wisdom shared through these times together with other families has strengthened our journey. The opportunities CureDuchenne have offered us to be involved and connected to the Duchenne community are immense.
What our family likes best about CureDuchenne is that a family that is personally affected by Duchenne is at the helm. They know what is at stake and they won’t take NO for an answer. They are working to fund research that will actually improve the lives of all of those affected with Duchenne – and won’t stop until every child affected has a cure.
Henry recently turned 8. He is in second grade and a Wolf in Cub Scouts. He loves Disneyland, Legos, swimming and plays non-stop with his big brother, Jake, and dog, Coal. He is a happy, goofy, no-fear boy. Our family has a new normal. We are optimistic about the future and live each day for what it is. While we may prepare for the future, we do not spend our days frozen in fear of it. Duchenne will not rob our children of their childhood. We feel so very Blessed to have been chosen to be Henry’s parents. While I would give anything to change the news we heard back on that infamous date, I am also so grateful for the people God has put in our lives to walk this journey – including our CureDuchenne family!