Welcome to Hayden’s Corner. I wanted to share our experience and tell you a little more about Hayden and our family.
Hayden was born on January 10, 2006, and like any normal disneyaholic family we started planning his first trip for November 2007.
Hayden grew like any normal baby and met all of his developmental goals up until his 8 month birthday when his pediatrician noticed he was still having difficulty sitting by himself and she recommend we go to a pediatric neurologist. After four months of uncertainty and two specialists later, Hayden was diagnosed with Krabbe disease. Krabbe disease is a very rare neurological degenerative disease that affects about 1 out of 250,000 babies a year. The disease attacks the peripheral nervous system, mainly motor skills. At the time, March 2007, we were given a prognosis of 6 – 9 months, as children with this disease rarely live past two years old.
As soon as we got the diagnosis we contacted several wish organizations and basically received the same answer everywhere. A child that young could not make a wish to go to Disney and the soonest we would qualify would be when he turned 2 ½.
So with the help of my brothers they raised enough money for all 12 of us to go to Walt Disney World over Mother’s Day week, and we had a ball; but, this was our first time with a little one, and a sick little one at that, so we had a lot of learning to do.
We were able to keep to our original plans. Eva, Hayden, and I, through donations made from a fundraising event from my Tae Kwon Do school and a local DJ, were able to take Hayden again. This time we knew a little more and again had a great time. In fact of all of our trips, I think this one was my favourite. Plus, we got to take him to Mickey’s Very Merry Christmas Party.
As soon as we got back we started planning our next trip. We decided again on May 2008 and despite all of the doctor’s predictions we were able to go in early May; and, we got to take Hayden to the Pirate and Princess Party which was a lot of fun.
A month before Hayden turned 2 ½ I got in contact with Make-A-Wish and they sent representatives that finally granted his wish. What else would it be but to go to Walt Disney World and see Mickey Mouse. Of all of our trips this was the most chaotic and stressful, not only because of Hayden’s worsening condition, but the wish organization was not very organized in what would be happening when we go there. Fortunately, we had been several times before otherwise we would have been very lost; but, we were able to take Hayden to Mickey’s Not So Scary Halloween Party. We still had a great time; plus, Hayden got to take us to Disney this time.
Two months after that trip, after fighting pneumonia for a month and a half, Hayden lost his fight with Krabbe and got his wings on 12/06/08, 1 month and 4 days before his 3rd birthday. He beat all the predictions by a year! Eva and I truly believe he was holding on so he could take us to Disney.
Since then we have been back to our favourite place once this past February. Some parts were exceedingly upsetting, and some we avoided all together, like meeting Mickey Mouse, because it was just too soon. Everything else was just as nice; it was just different. We are returning in May for my wife’s birthday and it will probably still be too soon for some things; but, we will have new things to celebrate, and old memories to relive.
Thank you for listening to my abridged story. I felt it was important for everyone to know why this area was dedicated to my little boy. If you have any questions please don’t hesitate to ask whether it is about Hayden, traveling with children with disabilities, or dealing with a terminal illness or returning after a loved one has passed. I would love to help in any way I can.