hollie1974
Mouseketeer
- Joined
- Dec 13, 2010
We fought pirates, danced with huge rabbits, ate lunch with some princesses, flew over rivers and mountains, drove race cars, was handed an offer we certainly couldn't refuse and much, much more!
Welcome to our trip report! Here is a brief summary of everyone....if you would like to know more about us please visit our PTR at http://www.disboards.com/showthread.php?t=2614191
Lily is our wish child. She is 4 yrs old and has a very mild case of Canavan. The only issue that Lily has due to the Canavan is seizures. As Canavan is a horrible, horrible disease we are very blessed that Lily's case is mild.
CJ is our 10 yr old son. He is a happy and outgoing boy who is probably one of his sister's biggest advocates doing what he can to educate everyone he meets about his sister and Canavan.
Drache is our nephew and a huge part of our family. Drache spends a lot of time with us and as he has been around for a lot of the bad, we felt that is was only fair for him to get some of the good. Drache turned 12 during our trip and got to celebrate his b-day at Magic Kingdom!
Tracy is my husband and Lily and CJ's dad. He's a hardworking guy who is very laid back and makes friends everywhere he goes. He is a big time social butterfly.
And then there is me, Hollie. I am the happy, sometimes cranky, slightly childish, fun loving but sometimes paranoid mom of the bunch.
Ok let's get to the TR!
So we drove (yes drove......due to lily's seizures I didn't feel comfortable flying) from Ohio. We originally planned on leaving 2/5 in the early morning hours, however there was a snowstorm due to hit the mountain area of West Virginia at the time that we would have been driving through. So we left 2/4 at roughly 11:30am. 16 hours before we planned to leave. We drove to my mom's house in Bluffton, Sc and stayed there Friday and Saturday night. Sunday we left her house about 7:30am ish and headed for Give Kids The World Village which is a meer 5 hours from my mom's house.
Here is a pic of Lily on our drive....we are almost there!!
So we finally are there! We do the check in thing and off to our villa!
Our Villa is in a nice location, just down the road from almost everything! We get the tour of the villa and the volunteer leaves us to get settled in. Tracy starts to bring in the luggage and oh NO!!!
Now let me explain something here......my husband works for a car dealership doing detailing. It is a small family owned business and they have been so supportive to us through all this with Lily. Because they feel we are family, they like to offer us little extras whenever they can. So when they found out that we were driving they loaned us a super nice car. The car was totally awesome (and we didn't want to give it back) but the hard case luggage carrier wouldn't fit so we had to use a soft carrier (and some of you may be saying I know where this is going!!). Well the two days the car sat in my mom's driveway in SC it poured....so yeah everything that was on top of the car was soaked! ALL of our clothes, except mine and Drache's cuz both our bags were in the car itself and not the carrier. Now I think it's funny but at the time I was not laughing. I didn't want us to go running around the village looking like we did after traveling....but my husband talked some sense into me and off we went!
Welcome to our trip report! Here is a brief summary of everyone....if you would like to know more about us please visit our PTR at http://www.disboards.com/showthread.php?t=2614191
Lily is our wish child. She is 4 yrs old and has a very mild case of Canavan. The only issue that Lily has due to the Canavan is seizures. As Canavan is a horrible, horrible disease we are very blessed that Lily's case is mild.
CJ is our 10 yr old son. He is a happy and outgoing boy who is probably one of his sister's biggest advocates doing what he can to educate everyone he meets about his sister and Canavan.
Drache is our nephew and a huge part of our family. Drache spends a lot of time with us and as he has been around for a lot of the bad, we felt that is was only fair for him to get some of the good. Drache turned 12 during our trip and got to celebrate his b-day at Magic Kingdom!
Tracy is my husband and Lily and CJ's dad. He's a hardworking guy who is very laid back and makes friends everywhere he goes. He is a big time social butterfly.
And then there is me, Hollie. I am the happy, sometimes cranky, slightly childish, fun loving but sometimes paranoid mom of the bunch.
Ok let's get to the TR!
So we drove (yes drove......due to lily's seizures I didn't feel comfortable flying) from Ohio. We originally planned on leaving 2/5 in the early morning hours, however there was a snowstorm due to hit the mountain area of West Virginia at the time that we would have been driving through. So we left 2/4 at roughly 11:30am. 16 hours before we planned to leave. We drove to my mom's house in Bluffton, Sc and stayed there Friday and Saturday night. Sunday we left her house about 7:30am ish and headed for Give Kids The World Village which is a meer 5 hours from my mom's house.
Here is a pic of Lily on our drive....we are almost there!!
So we finally are there! We do the check in thing and off to our villa!
Our Villa is in a nice location, just down the road from almost everything! We get the tour of the villa and the volunteer leaves us to get settled in. Tracy starts to bring in the luggage and oh NO!!!
Now let me explain something here......my husband works for a car dealership doing detailing. It is a small family owned business and they have been so supportive to us through all this with Lily. Because they feel we are family, they like to offer us little extras whenever they can. So when they found out that we were driving they loaned us a super nice car. The car was totally awesome (and we didn't want to give it back) but the hard case luggage carrier wouldn't fit so we had to use a soft carrier (and some of you may be saying I know where this is going!!). Well the two days the car sat in my mom's driveway in SC it poured....so yeah everything that was on top of the car was soaked! ALL of our clothes, except mine and Drache's cuz both our bags were in the car itself and not the carrier. Now I think it's funny but at the time I was not laughing. I didn't want us to go running around the village looking like we did after traveling....but my husband talked some sense into me and off we went!