Playing: It's a Small World

Nicky's goes to
DisneyWorld!

Valentine's Day Weekend 2000

Nicky and Mommy took a trip to DisneyWorld in Orlando Florida over the Valentine's weekend 2000 to meet other families afflicted by Epidermolysis Bullosa. The weekend was sponsored by fundraisers that helped the families pay for the trip, and the t-shirts we were wearing in the Magic Kingdom had the purpose to raise awareness. The red t-shirts said "Have a Heart for EB".
Click here to learn more about this event.

Nicky was not scared at all of the characters, and he loved Mickey Mouse, Pooh and Tigger. The get-together was wonderful because, due to EB's rarity, many of the patients rarely get to ever meet someone else with the same disorder.

There are 14 pictures on this page, so it might take a while to download. I apologize, I just had such a hard time picking and choosing! I promise it is worth the wait :-)

This first picture was taken the day we arrived at the initial get-together on Friday evening at the hotel. Nicky and Jody became best pals right away :-)

Nicky at the entrance of the Magic Kingdom on a cold Saturday morning. Beside him, Jennifer, 20 years old-she has the same form of EB Nicky has, behind him, his new Nana Shirley (Jennifer's grandma), behind Jennifer her dad Richard and to the far right Jennifer's sister Jody.

Nicky with little friend Kasey Norton in front of the Cinderella Castle. Nicky is holding a little Romeo's Mickey Mouse that the stewardess bought for him on the plane ride from Phoenix to Orlando :-) He kept telling everyone on the plane that he was going to go see Mickey Mouse, it was so funny. The Captain even gave him little wings.

Nicky just loved MouseLand :-) We were able to take him to all sorts of rides including all the kiddie rides (Pooh, Snow White, Small World), the train ride and even the Haunted Mansion. What a trooper!

With Mommy in Toontown

With Nana Shirley. Nicky liked her so much he even fell asleep in her arms... awwww. The t-shirts and the hats really brought us a lot of attention.

With mommy and... some BIG bear! Nicky was a little afraid of him... ha ha.

On our second and last day in DisneyWorld, we moused over to the MGM studios, where we took the very first picture of this page with Mickey Mouse, and the following two with Nicky's favorites... Pooh and Tigger!

Here Pooh is hugging Nicky... and Nicky returned him a little kiss... so cute. Jennifer loves Pooh too, and gave him a kiss as well...

Mr Tigger was pretty funny too. Nicky loved the Tigger movie so much he stood silent in the theater for the whole duration! WOW!

My little clown! Nicky just loved this ant! Ha Ha...

On Sunday evening at the dinner Nicky got to play with two little boys also afflicted with Recessive Dystrophic EB. Ian Swarr, in the middle, lives in Pennsylvania and will be 2 years old in May. Hunter Dundurand, on the right, lives in Florida and will turn 3 in June. These three little guys met before at the EB Conference in Los Angeles in August 1999.

Nicky just outside the Hotel we stayed at, the Disney All Star Movies Resort, waiting for the bus that took us to the airport to come back to Phoenix.

Some may own castles on the banks of the Rhine,
and hire an orchestra each morning at nine.
But richer than I they will never be...
I had a mom who made Web pages for me!

~Nicky's Realm on the Web~
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  Last Updated: July 02, 2006
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