Nilson Family

Our youngest son, Henry, was diagnosed with Duchenne in August 2011 – shortly before his 3rd birthday. It was a fluke test that shocked even the doctors as it was not an obvious diagnosis. We had no family history, and Luci was not a carrier. Upon genetic testing, we learned that Henry has a deletion of Exon 51. After our first year of learning to deal with the overwhelming diagnosis and ‘drinking from the hose, ‘we were happy to find Cure Duchenne for hope & support, as well as transferring Henry’s care to the Center for Duchenne at UCLA. We finally felt we were surrounded with like-minded people who – like us – were not going to let this diagnosis define their family and were never going to give up hope for a better future.

Now, almost 10 years into our journey, Henry is a happy, determined fighter who loves Legos, Art and anything Disney. Our older son, Jake, is a strong sibling advocate and devoted to his little brother. As parents, we strive to balance the medical & emotional needs for both Henry & Jake with ensuring that we make the most of each and every day. Duchenne does not define our family, but it has given us the opportunity to redefine what is truly important to us as a family and cherish our time together. We chose HOPE!

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