Angelman Syndrome, Life as an Angel

Monday, May 18, 2009

Well guys, we made it back! The walk went great, even though Brady was a bit cranky. He had been so overly stimulated from all the activities and had been up early that morning. We took the camper down, early on Friday, and just stayed at a campground close to the walk site. We had my mom and Craig's mom, otherwise known and Nana and Maw Maw, with us. When we first got there, it started storming. We didn't even unhook the camper, we just went inside and waited it out. We tried to turn the tv on, but lightening kept tripping the breakers, and then it started lightly hailing. But we made it through with no major damage.
Brady woke up about 1:30 Saturday morning, climbed down the steps and hopped into bed with Maw Maw. She said he lay down next to her, clapped his hands and said "ok, ok, ok",lol. I think he pretty much slept from then til 5am, when we all got up to get ready to leave.
Friday afternoon and the first part of the night, Maw Maw and Nana pretty much kept the boys at the campground, while Craig and I done walk stuff. We got several phone calls from Peyton, letting us know that Brady was tearing the camper apart,lol. I think that Brady pretty much gave Nana and Maw Maw a run for their money. He eventually found a mud puddle to play in. I think that the grandmothers were so exhausted, the mud puddle was a welcomed site, it gave them a little bit of a break from the wild man. There were chips in the floor and parts a diaper that Brady had torn apart. Brady had bit Nana and got blood and the grandmothers looked as if their hair might have been standing on end, when we got back Friday night,lol. They mentioned that I might fire my babysitters, but I told them heck no, that I didn't fire free babysitters,lol.
As for the walk, it really did go well. I don't think that there were as many people as last year, probably due to the anticipation of bad weather. It was thundering when we woke up Saturday morning, and the weather said there would be thunderstorms. Thank goodness, the weather held out, we had a good time. We had some people there from Texas,and even some from Indiana I believe. We learned a lot from the walk this year, I think that each year, will get better, as we learn more things to do and not to do. I'm already looking forward to next year.
As for Brady, I think he has raised nearly $900 so far. I'm not sure how much our walk raised, or how much the ASF raised all together. But I will let you guys know as soon as I have the numbers.
Thank you all so very much, for supporting our cause. With your help, we get closer and closer to a cure or at least treatment.

posted by angelwings @ 11:06 PM 0 comments

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What is Angelman Syndrome?

About Brady

Read Brady's Story Here

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

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