The Countdown is on…..

The boys(myself included in that noun) are excited about our trip to Disney World starting Saturday. The Make a Wish Foundation www.ncwish.org has been fantastic, thank you Emily and Lauren!!!!!!! They did a send off party for us at Carrabba’s Monday night and we had a wonderful night. Make a Wish put together little gift baskets for the boys the biggest hits being the underwater digital cameras and the swim fins, Jeremy got Red Power Ranger(of course) and Brandon got Spongebob(of course). That was a great way to end the day, because it was a difficult afternoon. We measured Brandon for a wheelchair that will be custom built. He is getting tired by the end of the day, by the time we get home from work and school he will usually just lay down on the couch until it is time for dinner. For those of you that have ever been around him for any length of time you know that is definitely not the norm up to this point. Since the whole process may take several months we thought we should start it now.
We will have a ton of pictures from our trip so check back in a couple of weeks!!!!!

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About

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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2 comments on “The Countdown is on…..
  1. Beth Gibb says:

    Wendy, Chris, Brandon and Jeremy:Have a great time at Disney World! I was there with Florian and my parents in May. Florian’s favorite ride was Buzz Lightyear and Pirates of the Caribbean. We read your blog and check out the site weekly. It has been a great way to feel connected. Frankly I can’t believe that you have time to post anything with work and everything else that occurs in your daily life.Florian often talks of the boys as he remembers them as the boys he danced with in Atlanta.Have a great time this next week and remember that we are always thinking of you.Love, Beth, Markus, Michela and Florian

  2. L. says:

    OK. Now that you have made yourself known on my blog, I am reminded to keep checking on yours. Hope you are having a great time at Disney.Laurel

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