LINCOLN, Neb. – A five-year-old girl with a debilitating circulatory disorder met all her favorite princesses during a fantastic Disney World adventure, with the help of a little “guardian angel” magic from Kids Wish Network.
Little Lily is a ball of fire who loves to sing and dance. She is a cheerful girl with an amazing imagination, and as such she enjoys telling stories and listening to them being read to her. She’s very independent, and loves trying to keep up with her older brother. The only thing that ever slows this little girl down is the rare disease with which she was diagnosed at birth.
Lily was born with one leg three times the size of the other and with large port wine birthmarks on both of her legs. Both are symptoms of Klippel-Trenaunay Syndrome, a condition that severely affects the circulatory system and causes malformed veins and lymph vessels. For Lily, it has led to complications such as daily bleeding for no apparent reason, life-threatening skin infections, blood clots, abnormal tissue growth, swelling in her legs and chronic pain. Because of the excess tissue that has grown in her leg, she has endured four surgeries, one of which required the removal of tissue equal to 10% of her body weight. There is no cure for the condition, and Lily takes daily doses of medicines to manage the pain, prevent clotting and alleviate anemia caused by bleeding.
A social worker told Lily’s mother, Carrie, about Kids Wish Network, a national non-profit organization that grants wishes to children facing life-threatening illnesses. Carrie was excited to learn that her young daughter, who has been brave through so many trying circumstances in her life, was eligible for whatever her heart desired.
More than anything in the world, Lily wanted to meet Ariel, the princesses and fairies at Disney World, so that’s exactly what her wish coordinator, Jill, set out to provide for her. With the help of some generous sponsors, Jill was able to arrange for a fabulous trip for the entire family that would fulfill Lily’s wish, and more.
Carrie explained what the trip meant to Lily and her family. “Without Kids Wish Network, our family would not have been able to provide this opportunity. One of the most exciting things for Lily was that she got to take her family with her. She was proud that she was taking her big brother to such a great place. Jill and Kids Wish Network thought of everything to make the trip an experience to remember. It was more than we could’ve ever expected.”
Lily was treated like a princess during her fun-filled, four-night vacation. Jill provided the family with tickets to Disney World’s Magic Kingdom, Universal Studios, Islands of Adventure and Epcot Center, and with some careful time-management, the family was able to fully experience each park.
Carrie said the highlight of the trip was when Lily met Ariel. “Ariel has real skin!” Lily exclaimed.
Lily was also thrilled to eat breakfast with the princesses at Epcot Center and to participate in the meet and greet with Mickey & Friends. She nearly filled her autograph book with princesses and other Disney characters. Some of her favorite memories were seeing the Lego dragon at Downtown Disney, watching the fireworks and parade, dining at the Pirates Dinner Adventure, and visiting the Bibbity Bobbity Boutique. When the fairy godmother at Bippity Boppity Boutique asked Lily what she wanted to wish for, she said “I already had my wish come true! I never want to leave here!”
Carrie explained, “While on the plane to Orlando, she commented how fun it was to be flying and not going to a hospital.” She continued, “This was a wish come true for our little girl who has endured so much and will continue to do so. She worked hard in all her therapies to be strong for her wish.”
Since returning home, Carrie says Lily is constantly talking about the trip. She put together her photo album to take to preschool, physical therapy and to share with anyone else who will listen to her. This was a special trip for a special little girl, and Kids Wish Network is happy to have provided so many wonderful memories for her.
Kids Wish Network would like to thank the following for helping to make Lily’s wish extra special: Cheri Karr, Pirates Dinner Adventure, Logan’s Roadhouse, Don Pablo’s, Compassion Partners and WonderWorks.
Kids Wish Network is a nationally recognized non-profit organization dedicated to infusing hope, creating happy memories, and improving the quality of life for children. If you know a child between the ages of 3 and 18 who may be in need of its wish granting services, please call 727-937-3600 or toll free 888-918-9004. For more information on Kids Wish Network, visit their website at www.kidswishnetwork.org
Written by: Editorial Staff