In just over a week our family will be headed to Ohio for our 3yr old son Drew, and I thought it was time to share some details …
In October 2021 our youngest boy, was diagnosed with Duchenne Muscular Dystrophy. It is a rare X-linked genetic disorder that causes muscle deterioration over time, and has no cure – today.
Shortly after diagnoses, here in Houston, we drove to meet with one of the #1 DMD doctors in the country (in Columbus, OH). We will see him and the team again this July and will travel to see him every six months.
As sad and heartbroken as we are, WE DO HAVE HOPE! Drew can receive a weekly infusion treatment to slow the progression of this disease. We do indeed feel blessed that Drew can receive this treatment that was the first DMD treatment approved in 2016. Only 13% of boys with DMD have the specific exon mutation to receive this specific exon skipping treatment called Exondys 51.
Today Drew received treatment #31 of Exondys 51 and continues to do very well, with no side effects from treatment! The treatment gives his body a way to make some of the dystrophin he currently cannot make on his own, which is critical for all muscle repair. Here is a quick video explaining the disease and how his infusion treatment works. This video describes the deletion of Exon 50 which is the exact deletion Drew has. https://www.exondys51.com/what-is-exondys51/how-it-works
Drew was chosen by Jen & Tony Dumm to be honored at a very special event that gives all proceeds to FIND A CURE FOR DUCHENNE MUSCULAR DYSTROPHY. This will be the 15th year they have held this fundraiser in Cleveland, OH in their son Owen’s name. It is also the first time they have featured another boy, as one of their “Duchenne Warriors”. We are so very honored!
Come join the fun and help us #derailduchenne and help #DrewDefeatsDuchenne!
If you can’t attend in person, but would like to Donate in Drew’s name, you can using Venmo or PayPal. You can also donate directly to Parent Project Muscular Dystrophy if you prefer. I will write one big check in Drew’s honor to put a stop to Duchenne and will also be matching donations, doubling the impact to help #DrewDefeatsDuchenne ❤️
Thank you all in advance for the prayers and support. ❤️
Bart Thomas ><>
http://www.joainc.org/picnic-in-the-park.html
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