July 2013 – Nicky, 16.5 years old, on the deck of our cruise ship as it was approaching Dawes Glacier.
Following is an excerpt from the Book “Butterfly Child”.
In early 2012 a woman from the Scott Ward-Schofield Memorial Fund contacted me. This Charity was formed to raise awareness for Epidermolysis Bullosa and arrange and pay for holidays, short breaks and special days out for sufferers and their families/carers. I was happy to help this woman spread the word about her foundation and then several months later she asked me if Nicky had in mind a place to go for a vacation. “Oh, I don’t know” I told her. Nicky was having his hand surgery at the time and things were hectic with my school, so I kind of let it go, but when she asked me again several months later I went and asked Nicky if there was a place he wanted to go. “Italy” was his answer. Oh silly boy! I know trips to Italy are not exactly cheap, but the reason why I could save for them fairly easily and afford to go somewhat frequently (every few years) it was because the airfare was the only thing I had to worry about. Once I got there I didn’t have to pay for a hotel or even food. That’s the perk of having your family there.
I told Nicky I was already saving for our trip to Italy as his gift when he graduated High School; we were going no matter what, so “Where else you would love to go?” His answer, with a serene expression on his face was: “Somewhere cold please! Somewhere cold!”
Somewhere cold… hmmm… We live in California so the closest cold place to us would be Alaska. As I thought about the logistics of the trip itself I honestly felt a cruise would be the easiest thing for him to do. He would not need to get out of his chair at all until he went to bed. He could cruise the whole ship in his wheels. He would not need to get into a car to go from point A to point B; even in and out of the ship would be a breeze if we got a shuttle with a wheelchair lift. He loved the idea, so we put in the request, which was approved a few months later. We were ecstatic!! The cruise was scheduled for July 2013.
More of Nicky’s story in the book… Thank you so much for your support!!
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Love & Light,
