Sunday, October 31, 2010

meeting the Ringgold's & Jonah & the EB race

Halloween weekend was super busy. On Friday Melanie, Lacey, and I drove to Winston-Salem to meet Jonah, and the Ringgold's (Bella's family). It was great to finally meet someone we feel like we know so well, although I was a little nervous to meet them because I know a lot about them but they don't know a lot about me. It was great though, they were wonderful to talk to and super sweet. Jonah is even cuter in person than in his pictures!!! It also made me know with all my heart that spreading the word on EB and teaching area hospitals is what I want to do. It will be extremely rare that someone with EB is born in this area but there is always that chance and I want to be able to educate the staff about what to do and not to do just in case. We got some great information from Tim (Bella's dad) and also I emailed a nurse at CHOC (Children's Hospital Orange County) and she sent us all of her information on EB. After the EB gathering we drove home and I got home around 11:30pm and then the next morning got up to go run a 5k race for EB. It was FRIGID! I am definately not a cold weather runner and it was 32 degrees that morning. For the first 1.5 miles I totally couldn't feel my face and I was running with the sleeves of my shirt over my hands. The last 1.6 miles was a little better, I just had to keep thinking about those precious babies and the pain they live with. We hope to help organize the race next year and gets tons more runners to be able to raise money for DebRA.
Melanie, Lacey, and I after the race. (I also won a free night at the Grove Park from buying $10 worth of raffle tickets!!!! So excited for that.)

The back of our shirts. We wore these while running and many people asked us about the kids at the race. We all wore our shirts the whole day and many people asked about them so we were able to get the word out to more people. It was great to be able to let people know that this disease exsists because most people have never even heard of it.

Lacey and I before the race.
Melanie and I before the race.

Tim and Ali (Bella's sister) at the EB gathering on Friday.

Ali and Jonah

Jonah LOVES to swing. We had to get all of our pictures with him still moving because that was the only thing that was making him happy.

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