Costello Syndrome Conference 2009

Most of you know my big brother Christopher. Despite all of his challenges, he is one of the happiest people I've ever met. He loves being around people, laughing and having fun. Christopher was diagnosed some time ago with Costello Syndrome. My older sister Michelle also had it and passed away from it in 1986. (see Dec 2008 post) Costello Syndrome is a genetic mutation of the HRAS pathway that causes a host of mental and physical disabilities. Here are a few links to learn more about it: Costello Kids Network and Wikipedia.

Last weekend the Costello Kids Network hosted the 2009 Conference in Berkeley, California. Along with my parents, all of my brothers & sisters were able to attend to support Christopher. It was such an amazing weekend! It was the first time we've had all 7 of us kids together in almost 3 years! Even more special than having our family together, were the new friends that we met there. CS is such a rare disease that Christopher has only met one other person who had it. We got to meet other kids of all ages and their families and share our experiences with them. Thinking about them literally brings a warm feeling to my heart right now!

The conference was sponsored in part by a team of physicians that wanted to conduct research and spread information about CS so all day thursday, friday & saturday they held workshops and classes for the parents. Since the parents were tied up all day with the doctors, they had a daycare/lounge for the CS kids. My brothers and sisters & got to spend our days hanging out with the kids. They were so amazing! It was so much fun and it made me incredibly grateful for Christopher and the unique set of experiences he has blessed our family with. It also made me look at things in a different perspective. I get so caught up in the stresses of my life and it was a good reminder to see these kids being so happy in the face of so many obstacles.

Most of the pictures of the weekend were on my mom and Becky's cameras, so I'll post them as soon as I can. Til then, here are the only 2 that I have. They were taken on my cell phone, so they're a little blurry. Sorry!

I took my running clothes, hoping that I'd be able to work out while I was there. I found out that right by the hotel was a marina and this gorgeous park that ran along the San Francisco Bay Trail. I know I look gross, but it was such a pretty view. If you look behind me you can see the city skyline and the golden gate bridge across the bay.


All 7 kids together! This picture is so us it makes me laugh!


I will post more pictures from the weekend, just as soon as I get them!