Meeting Dakin—Gwendolyn's Texas BoyfriendJuly 02, 2009 by Victoria Strong One of the first thoughts to cross our minds when we figured out the route we were going to take on this big journey was that we may have the opportunity to meet the Lovelace family who live in East Texas. Devon and Dakin Lovelace have a darling little boy named Dakin. His smile could melt glaciers. We email and facebook regularly and we follow each others blogs on a daily basis, so it feels as if we know one another really well. Dakin is just a few weeks younger than Gwendolyn. He has a rare form of SMA called SMA with Respiratory Distress or SMARD. There are only six other cases around the world!!! Yes, six! While Dakin's issues are somewhat different from Gwendolyn's, Devon and Dakin have embraced the petition and our SMA awareness efforts with full force, gathering hundreds of signatures, meeting with their legislators, doing news stories, and personally encouraging every effort we have ever attempted. They say we inspire them, but they are the ones who inspire us because of the challenges they face almost completely alone, the constant lack of education from almost the entire medical community about their son's disease, their drive to make SMARD information more accessible to other families that they have to create from ground zero because it does not yet exist, and the way they focus on the hope that SMA research will benefit SMARD as well.
We were so thrilled to finally meet yesterday in Tyler, Texas (and as an extra treat for Bill and Dakin we met at the award-winning BBQ joint, Stanley's). We had a blast chatting away with them, while Gwendolyn and Dakin blew each other kisses and shared smiles. Dakin is even more darling in person and we are so happy we got to spend time with this wonderful family.
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Are You An SMA Carrier? Advocating for the Affordable Care Act: Gwendolyn's Story (Video) It Arrived!!! Let the Adventures Begin!
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