When I first lived in Orlando, I remember driving around looking at neighborhoods and going down this street where I could see giant red-topped mushroom over a wall. Of course, I instantly thought of Walt Disney World and its whimsical architecture, but saw a sign saying “Give Kids the World“. I did some research and found out it was an organization that accommodated the wishes of chronically ill children and their families. I knew then it was a place I wanted to somehow help with.
Then, life happened…I moved away and back and away and had my own children. I have been given the gift of 3 healthy children and I understand even more, as a mom, just how valuable Give Kids the World is for children that need it.
For those unfamiliar with Give Kids the World, here is a bit more about them from their site:
A child with a life-threatening illness between the ages of 3 and 18, whose one wish is to visit any of Central Florida’s best loved attractions, may have their dream vacation come true by first being identified by a doctor as a child with a life-threatening illness. The child is then teamed up with one of over 250 partnering wish-granting organizations from
around the world, who then refer the eligible Wish Child and their family to GKTW Village. Once a Wish has been approved and recommended by the Wish Child’s local wish-granting organization, the Give Kids The World Wish includes:
- Accommodations on-site in one of 140 villas
- Donated tickets to all three major theme-park resorts (SeaWorld Orlando, Universal
- Orlando and Walt Disney World)
- Meals in our Gingerbread House Restaurant and Katie’s Kitchen; and ice cream all day in
- the Ice Cream Palace
- Many other fun surprises
Everything is entirely cost-free to the family!
In the course of the past year, I became close to a group of people that raised money for Give Kids the World, and am happily now able to help do that again. Our group of 43 friends are organizing a fundraiser for Give Kids the World from now until October. I thought the best way I could help would be to raise awareness with all of my wonderful readers. Before I tell you more about how to give, I wanted to let two of my friends share their personal stories of how amazing Give Kids the World is. Please give them a moment of your time as their tell their stories…
From John Saccheri -
The year was 1990. Matthew was 12 years old and I was 19. While it doesn’t seem like 7 years is a huge difference, it certainly is in terms of life experience at that age. Even though we were cousins, and because of the age difference he called me Uncle, we were like brothers. I was always, and still am a big kid at heart and Disney fanatic. Matthew had never been to Disney and it was my tales and pictures of Walt Disney World that kept him fascinated.
The most memorable, crazy thing I came up with that Matthew loved was listening to the Electrical Parade music in pitch blackness with a strobe light. You know how movements look weird in a strobe light? Doing this with the Baroque Hoedown never got old for him.
So, I was his big brother and made time for him whenever I could between work and school. Matthew was my number one fan. He was my audience. Entertaining him made me feel special and I knew I was planting Disney memories that would last him a lifetime. I just didn’t appreciate the definition of lifetime. I bet most 19 year-olds don’t. And that is why this story is very important…
Matthew’s mom started to notice many bruises on him and how easily he would get a black & blue compared to other children. He was diagnosed with Leukemia. I remember being in complete denial of what this could ultimately mean and went on with life as usual. As the medications changed Matthew’s physical appearance and he became sicker, requiring the use of a wheelchair, there was no denying life had dealt our family a terrible tragedy. We prayed day and night. He was told that he might not survive without a bone marrow transplant. I remember him telling me that he might die. It was the first time in my life that I was unable to respond. I had no words. A 12 year old was telling me he had no life ahead of him while I was looking forward to mine. I accompanied Matthew and his family to the hospital often. I appreciated life every time I walked into the Schneider Children’s Hospital and was confronted with moms and dads not knowing how many more weeks or days their children had. The next time you have a fight about something in your home, think how trivial it is compared to what some people must face everyday.
Matthew received his bone marrow transplant from a relative and it appeared to be a success. They had confirmation that this new bone marrow was being accepted and was producing the proper cells. We were all ecstatic.
A few days later, we got word that he was being flown home, from the hospital in Seattle, back to New York. However, he wasn’t being sent home for a good reason. The marrow showed a complete rejection and he was being sent home to die. Literally, the doctors in Seattle had some sort of culture to tell the hard truth, even to their youngest patients. I am sure they had to have the parents consent. Whether you agree with it or not, they told him he was going to die shortly after arriving back home. He called me to tell me this news. All I could do was remain strong, tell him they had no idea what they were saying, hang up the phone and sob uncontrollably.
I had not realized the hospital was in touch with Give Kids The World and the Make A Wish foundation. I received a call from them asking for my name and personal information. When I inquired why, they informed me I was a part of his wish. He wanted to go to Disney World, but it was made very clear that he wanted to go with his Uncle John. It is hard to type this right now. I felt so special. It wasn’t just a common wish to go to Disney World, but to go with me.
It was the weirdest emotional concoction you could imagine. I was going to Disney World, I should be happy. I need to smile and be happy for Matthew. But make no mistake about it, we all knew the underlying problem.
We entered the Give Kids The World Village. These people are living saints. From the accommodations to the food, the place was fantastic. The problem was, it was full of people almost certainly enjoying their last hoorah. I hate to be literal about it, but I hope by doing so we all realize what we have and put things into perspective. Matthew, his parents and I spent a full week enjoying Disney World. At a time when we owed over a hundred thousand in medical bills, this was a welcome respite. Video cameras were never used so much to catch special moments. I watched as Matthew and his Dad went fishing in the village. I just filmed their backs for a whole hour, thinking, one day his Dad might need this.
Matthew needed special attention because he was in a wheelchair and had something called a mediport installed into his chest for easy blood access. The room they gave us had everything we needed to get him around, including a special shower and area to keep his mediport clean. It appeared no expense was spared. I remember thinking that if I ever give to a charity when I grow up, this would be it because they obviously spend the money correctly.
Disney turned out to be a great time. When a child wears a Give Kids The World button, you can bet the characters see it and give them attention like you’ve never seen. I cried as Matthew had a semi-private 10 minute conversation with Snow White about the Dwarfs. He was smart enough to realize they were talking bologna, but that’s what made it so special. He was escaping the reality, even for a few minutes and loving every second.
We returned home and Disney was all he could talk about. As I suspected, he told me the Haunted Mansion was his favorite but I wondered if he told me that because he knew it was my favorite.
I was awoken 2 mornings later to my stepfather uttering these words that will stick with me forever, “He’s gone.“
Just like that, “He’s gone”…I just fell back into bed with an empty feeling of loss.
Really? Just like that. It was as if life gave me a hard slap and said, “Welcome to reality.”
Fast forward 20 years to the present. I’ll be 39 in a few months and Matthew’s story, although always with me, recently crept up in an unusual way. I came across a card Matthew wrote me while cleaning up my home office. I hadn’t seen it in 20 years. All the emotions came rushing back and I felt this NEED to write about it. I contacted Suzannah and asked if she’d be interested in a Blog post and as fate would have it, some sort of fundraiser was already in the works.
God? Coincidence? Whatever you believe, all I hope is this. If you give anything to a charity this year or whenever, please consider Give Kids The World and the Make-A-Wish Foundation. They make a huge difference at a time people really need it. If you do it in memory of Matthew, I thank you and know I wrote this for a reason.
I love you, Matthew DeSantis,
And from my friend Kaylene J, who also has some Give Kids the World experiences to share, and will explain our fund-raising efforts:
“The most magical sound in the world is that of a child’s laughter.”
“Give Kids The World Village is a storybook 70-acre, non-profit resort located near Central Florida’s most beloved attractions that creates magical memories for children with life-threatening illnesses and their families. GKTW provides accommodations at its whimsical resort, donated attractions tickets, meals and more for a week-long, cost-free fantasy vacation. To date, Give Kids The World has welcomed more than 90,000 families from all 50 states and over 65 countries.”
I’m a member of a group of 43 Moms and Dads, who have come together to help raise money for Give Kids the World. I’m excited about the opportunity to help make a wish come true for a child with a life-threatening illness, and to be a part of helping his or her family make priceless memories together.
I’ve been blessed with 5 healthy children, and yet I know other people who bravely face life-threatening illnesses with their sweet children every day. Two precious friends of mine have been on “Wish Trips” to Give Kids the World with their children. One of them lost their daughter several years ago to the illness that she was fighting. She recently shared her experience at the Village with me. While it was essentially “indescribable” she touched on a few highlights with me.
Naturally, she cherishes the memories of that trip, and what an incredibly special place it is. She talked about the 24 hour Ice Cream Shop and how at all hours of the night you would see children there. Some were recovering from a chemo treatment, had lost their hair and felt ill, so their Mommy or Daddy would bring them downstairs for some ice-cream. Watching them tugged at her heartstrings. As a Mom whose daughter had health issues too, she could relate all too well to what they were going through.
She talked of how each night they’d return to their room to find treasures waiting for the kids…giant stuffed Mickey’s and more…and the smiles that brought to her daughter’s face. She spoke of the “happy music” that they played at the Village and how everywhere she looked, she would see children grinning…and how it brought tears to her eyes. She said she had the opportunity to meet Henri Landwirth, the founder of Give Kids the World. He walked up to her daughter, held her hand and told her how special she was. She cherishes each and every one of these memories, just like so many other families that have visited Give Kids the World Village in Florida. Another friend of mine received a miracle for her son, and they celebrate his post-transplant health today.
On Friday, October 1, 2010 our group of special friends will visit the Give Kids the World Village for a tour. Some of us will bring our children with us, as we feel it will give them such meaningful insight. They will be able to see firsthand the struggles that other children have, and to in turn count their own blessings of health. It will help them to open their hearts even more to others. Our group will also make a donation to the Village. We plan to raise money through neighborhood “Ice-Cream Socials” this summer and by collecting donations as well. Many of the children who visit Give Kids the World spend day after day taking medicine and visiting doctors. We invite you to help bring a smile to their faces.
If you would like to make a donation, please visit our Fundraising Page at: http://www.firstgiving.com/wdwmoms Donating through this site is simple, fast, and totally secure. Thank you for your support.
Thank you, John and Kaylene for sharing your stories with us. I hope everyone reading this can find it in their hearts to send something to this amazing and beneficial organization. Every donation we receive at the above link will go directly to Give Kids the World. If you decide to give, I’d love if, in the comments section of the donation page, mention zannaland – as I know John and Kaylene (and all of us joining together in October!) would love to know that their stories made a difference and helped the cause.
If you are unable to give financially but would like to do something else to help out the Village, check out the various volunteer options available at the Give Kids the World site. Be sure to explore the site and all the amazing pictures, quotes, stories and more. Thank you for taking the time to make a difference!