I'm new to the boards but have already invested HOURS pouring over all the information here... I'm a bit overwhelmed but totally excited too. We meet with our MAW wish screener in about an hour!
I have 4 boys ages 14, 11, 8 and 5 (almost 6!). The youngest Tyler has autism/ADHD/SPD and was just recently diagnosed with Friedrich's Ataxia. FA is a rare neuromuscular genetic disease that causes loss of motor function and control in the legs/feet/hands and also can have scoliosis, diabetes and cardiomyopathy. Thank goodness we don't have several of those yet, but he has a rare form of the disease (leave it to him to want to be super special and rare of the rare). He does already have pretty progressed balance/gait/coordination problems but is still somewhat mobile. He has moderate cardiomyopathy that is different than they have seen in kids with this disease at this level of progression. So that is very scary and serious. We just started ACE inhibitors to help the heart function if we can. There is no cure or treatment for his disease, unfortunately.
On the bright side, he is the most happy, loving, funny little kid and he can't WAIT to go to Disney. He also wants to be Steve from Blues Clues for part of his wish so we will see.
Since we are just starting our wish planning I have no idea when we will go or details. With the way his heart problems are progressing and his mobility decreasing so fast, I hope they can make it happen soon. His birthday is in May as well as one of my other kids and we are hoping to go for that. If we can't pull it off that fast I'm going to ask them to wait until fall when it cools back off a little and hopefully is not as busy (school and all).
I have found so many answers here and just want to thank you all for sharing! I was really concerned that we wouldn't get to stay at GKTW because we have 4 kids and 2 adults (if my mom is allowed to go with us, I'm a single mom) but it looks like we might still be able to make it work which makes me so happy!
I'm kinda sad I don't have a girl anywhere in the group to do princess stuff... I'm the only princess around in this house full of boys! Heheh
Anyway, just wanted to say HI and thanks and introduce ourselves. I'm sure I'll have more questions and posts as we actually start planning!
Hugs,
Tami
