It was our search to find out why Deacon has apraxia, among other challenges, that led us to genetic testing. That testing is how we learned that both Deacon and Drake suffer from an extremely rare genetic disease called Bainbridge-Ropers Syndrome (BRS). As some of you may know Deacon and Drake are only 1 of 4 known sibling cases in the world with the disease affecting less than 200 in the world. Upon receiving this diagnosis our geneticists told us that neither Deacon nor Drake would ever obtain verbal speech. When we received this news, we didn't cry. Instead I smiled and politely told them they were wrong.
We knew/know the odds are against us, but there are children with severe apraxia that do obtain speech and there are two children with BRS that I am aware of that do communicate verbally. If they can do it, we can do it too! Though Drake is too young to diagnosis at this time, we know more than likely he too will have apraxia. Of everything that comes with this genetic disease, beating apraxia has so far been the hardest. This is why we walk. We walk for Deacon, Drake, and the other children who are struggling to find their voice. Though I hope one day we will find a cure for BRS, at this time we can't change our genetic makeup, but we can put all of the newest research and technology into our therapy approach to help our children make the complex connections and movements they need to speak.
Deacon's favorite sound to make is a roaring sound. In fact, him and his grandfather can have Facetime conversations of just the two of them roaring back and forth. But in his roar is strength, and I hope that's why you will join is in Roaring for Deacon at this year's Apraxia Walk.
Every dollar raised helps support Apraxia Kids. I believe in the work Apraxia Kids does to strengthen the support systems in the lives of children with apraxia so that each child is afforded their best opportunity to develop to their full potential.
We need your help. If you can't walk with us would you please consider making a donation? Your donation goes to fund amazing programs like iPads for children who need it to communicate, parent and speech therapist workshops, research, and a program to assist families in need with speech therapy costs.
Thank you again for your support and together we will show the power of Deacon’s mighty roar!