Valentine's Day Weekend 2002

When Nicky started kindergarten in September 2001 he started realizing he was different. He came home one day from school, and in the middle of changing his gauze he said to me: "Mamma, none of the other kids at school have gauze"... and then went on telling me how the other kids can run and play, fall and not get hurt. He did not sound particularly upset about it, so I responded with a smile and a hug and told him he had special 'skin', but I was more upset than he was. That made us start talking about other kids with gauze that he met in the past, and I showed him the page about our DisneyWorld "Have a Heart for EB" trip we took 2 years ago. The second event was going to take place in February 2002 and I felt Nicky now, more than ever, needed to be around others like him so that he would not feel so isolated, but I had no way to pay for the trip. This time around I could not make the trip alone with him because of all the extra luggage involved, the wheelchair, the g-tube supplies and all, if we were to go, I had to be able to take my fiancée' and his daughter to help me out, and that was going to be too expensive. That's when I sent an email to the Make A Wish Foundation asking for their help in financing the trip so Nicky could be around others just like him, even if only for a few days.

From left to right, top to bottom, a volunteer from Make A Wish, the 3 kids of Bakersfield's East High that did the fundraiser, Greg and Skylar, Shirley's husband, and kneeling, Shirley, myself and Nicky.

Due to EB's rarity, many of the patients rarely get to ever meet someone else with the same disorder. Nicky had met a few local children, but I felt this bonanza of children with EB in one place would be just what he needed to make him feel somehow 'integrated' at this very crucial time in his life when he was realizing he is not like everyone else.

The Make A Wish Foundation called me right away and the pediatrician immediately sent out the info they needed to approve the Wish for Nicky. Soon thereafter I got a call from Shirley from the Bakersfield branch of The Make A Wish Foundation and I was extremely moved on how wonderful she was and how much she wanted to help. She asked me permission to make this Wish a publicized one, so she involved 4 seniors from Bakersfield's East High (Nicky was one of their projects) and invited a local TV station (KERO 23) to come and videotape the event. They gave Nicky a cute blanket and a few cute toys on our way to Stanford where Nicky had a scheduled hand surgery that was canceled.
When I told Nicky's teachers that he was going to be on TV they taped it and put it upon themselves to do their own fundraiser for Nicky. Before I knew it posters where around the school with Nicky's picture 'Make Nicholas Dream Come True', and fliers and envelopes went home with every student asking for spare change. Parents of some students took up collections at their work and many envelopes came back with cute drawings and comments from the other little students. As impossible as it may seem (I was astounded), Nicky's Elementary School of 700 students raised $1700!!! The students of Bakersfield's East High put up fliers themselves and did a lot of local fundraiser work as well.

Nicky, myself, Greg (my fiancee') and sweet Skylar at the train station.

Finally February 12th arrived, our departure date. A limousine came to pick us up and took us to Bakersfield, where everyone was waiting our arrival at the Amtrak Train Station. Shirley from the Make a Wish foundation was there with her husband and a volunteer, 3 of the kids from Bakersfield's East High and KERO 23 to memorialize the event. Shirley had a new backpack for Nicky full of toys, books and crayons and gave me several rolls of film. One of the books in the backpack is now one of Nicky's favorite books, I must have read it to him 100 times already!

The backpack has a story unique in itself, as after the train left for Fresno we realized it had been left at the train station! Nicky was pretty upset but... what to do? I had my cell phone with me, so I called the MAW office and talked to Shirley and told her about it. She immediately sent her husband to pick it up and they then drove to Fresno that night to deliver it to us! We could not believe it, but all Shirley said was "We do it for the kids". God Bless her. She later told me that she actually lives half way between Bakersfield and Fresno, but still, I will never forget this gesture.

Nicky on the train waving bye-bye.

The train for Fresno took off soon thereafter and that is when our journey to the Magic Kingdom begun. As soon as we arrived in Fresno, a limousine took us to a Howard Johnson for that night, and the following morning another limousine took us to the airport to take a Delta flight to Salt Lake City, Utah, and there we waited just a little while for a connection to Orlando.
Stopping over in Salt Lake City was actually a little bonus as the 2002 Salt Lake City's XIX Winter Olympics were in full swing, and the airport was decorated with all kinds of Olympic paraphernalia, it was quite the site!
The flight to Orlando was smooth, and when we arrived we got a ride on a bus to the Disney's All Star Sports where we would stay for the next several days. We did not see anyone arriving that day, so we basically relaxed from the trip, it was the next morning that we finally got to see several EB families arriving for the event, many of which I had met in the past, and it was heartwarming to see their children growing, like everyone was commenting how much Nicky had grown.
DebRA had set up a booth in the lobby to greet all the families and to answer any questions we might have, but who stole the show was a clown that was making balloons for the kids, it was priceless. Diane Abbott, the chairman for this DebRA event, told me that 70 patients had registered, and 60 families were coming, up from 50 families in 2000. It was in the lobby that all of a sudden it seemed as if everyone was showing up at the same time! It was a sight to behold.

Nicky and I at the Salt Lake City Airport.

Nicky was so attentive, as he saw so many kids with gauze all of a sudden, and I took a cute picture of him with Ian. He would see many more kids that night at the dinner at Epcot.

Special buses from DebRA came to pick everyone up that evening and take us to the Epcot Center's 'American Adventure' for the Valentine's Day Banquet. Diane Abbot was on hand for the before-dinner prayer, and after dinner had a special giveaway for many of the children and everyone present. I cannot believe I did not take any pictures of this event! We had Bruce Gunn at our table, a spirited and inspiring 34 year old with the same form of EB as Nicky, along with the Cameron's, the wonderful family who came up with the idea of the 'Have a Heart for EB' in DisneyWorld, and have been so active in spreading the word about EB in the media, and have appeared in Dateline last summer. It was a privilege to see them again.

Nicky with Ian, who will be 4 years old in May. Both boys have the Recessive Dystrophic form of EB. Ian lives in Pennsylvania with his mommy Delicia.

After dinner we were handed wonderful baskets full of goodies... t-shirts for everyone to wear the following day, and an assorted variety of snacks. Not all baskets had the same things, but in ours we had a wonderful red and white umbrella with the words 'Have a Heart for EB', a couple of heart pens with the same wording and a cute seal plush for Nicky. I hang these small plushes on a pin hanging from his g-tube for decorations, so his room does not look like a hospital so much, so I liked the addition :-)

On our way out of the park we were reserved a viewing area for the "Illuminations" Show that is part of Epcot's closing every night. This is quite a spectacular fireworks show choreographed with music and a spinning globe that seems to glide on the center lake, quite the show! Nicky was not too pleased with the loudness though :-(

Click on the button below to read more and see lots of cute pictures from the Magic Kingdom, Sea World, the Animal Kingdom and our trip back.

When You Wish Upon A Star

Navigate this kingdom with the transporter!

Playing: When you Wish Upon a Star
Last Updated: July 02, 2006
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