We have two sons and a daughter and no family history of Duchenne. In April of 2018, we took our kids to the pediatrician for a well check. We mentioned that stairs seemed to be difficult for our oldest son (8 at the time) and the way he got up from the floor (gowers sign) worried the doctor and we were sent for testing from a Neurologist. A week later we got the call that our both of our sons had Muscular Dystrophy. Weeks later the genetic test confirmed they had Duchenne. (Deletion of 46-51) It’s been a very difficult journey and so much has changed since that day. We moved to a one story, renovated our home, bought a giant mobility van that we call the Quinjet (our boys like Avengers) and as of October 2020 our 10 year old is no longer able to walk. I started writing for the Duchennexchange to share our story and hopefully help others on the same journey. I later found out that I am a carrier as well. It’s been a tough road, but it’s also amplified the beautiful moments and given us a perspective that I wouldn’t want to give back.
How to Identify and Manage Fat Embolism Syndrome (FES) in Fractures
REGENXBIO Announces Completion of Enrollment in Cohort 2 and Additional Positive Interim Data in AFFINITY DUCHENNE® Trial
Sarepta Therapeutics Announces Positive Data for Duchenne Muscular Dystrophy Amenable to Skipping Exon 51
CureDuchenne Welcomes Patricia Brown as Senior Director of Community Engagement
Make an Impact
You can advance the care, treatment and cure for Duchenne muscular dystrophy. Contributions in any amount can truly make a difference and can be credited to a fundraiser or event from the list below.Donate