EB is in the news!

Well, the hearing was a complete success! Ella and I arrived around 9:30 and the hearing started at 10. Several other EB families from VA and MD (and even one from NJ) were there, so it was great connecting with them. Many of these people I have had the privilege of talking to and emailing over the past 3 years, but have not had the chance to meet in person. I was so happy to connect with them! We had people with EB, moms, dads, grandmas, grandpas, aunts, brothers, and even Ella’s dermatologist came to the event (he treats most of the EB kids in the area)! The turnout was incredible! The room was completely packed with standing room only. In fact, in a meeting later that afternoon a woman told us that she had tried to attend the hearing but wasn’t able to get in the door.

Alex did a great job of representing EB families. You can read his testimony here. Ella sat through most of the hearing, but after about 1 hour and 45 minutes she decided it was time to go. We spent the last 30 minutes of the hearing in the hallway. We did get our picture taken for ABC, which you can see in this article. There's also a video that includes shots of Ella and me, Jackson (Alex's son), Megan (who I blogged about here) and her brother, and other EB kids. What great awareness for EB! I am so honored that Ella and I were able to participate in this hearing.

After the hearing Ella and I made a stop by my old office. We got to see many of my former coworkers and the Senator. What a wonderful office! I miss working with them! They, of course, loved seeing Ella. One of the staff assistants gave her a doughnut, so Ella spent our time sitting in a chair chowing down. One minute I looked over and she had taken a couple of bites. The next minute I looked over and she was over half done. It was lunch time and that girl was hungry!

By the time we got home Ella was on the verge of a meltdown. It had been a long and eventful day and she was in need of a nap. The day was perfect and the hearing couldn’t have gone better. I continue to be amazed at these incredible families who deal with EB every day, and I am honored to call them my friends.