Tomball girl with rare disorder gets Disney World wish granted

A young Tomball girl, Haley, suffering from a rare progressive brain condition, recently had her wish to visit Walt Disney World granted thanks to Kids Wish Network and several sponsors from Texas and Florida.

When Haley was born, she showed no brain activity and was kept in the hospital for three months. During that time, Haley was diagnosed with a rare condition, Progressive Basilar Invagination of the Spine. This condition causes the spine to calcify, effectively “strangling” the brainstem. Because of her condition, Haley has endured eight surgeries to the base of her skull and to the top of her spine to relieve the extreme pressure that builds up in her skull by chipping away at the bones in the area.

Due to the condition of her spine, Haley’s head movement is limited and required her to wear a halo device in order to keep her head straight; she was just recently able to remove the device. In addition, Haley also suffers from Spina Bifida, a birth defect in which the spinal column fails to close completely before birth, often resulting in paralysis. Because of this, Haley has no feeling in her legs, is confined to a wheelchair and must wear leg braces to straighten and stretch her legs.

While talking to a Kids Wish Network professional fundraiser, Haley’s grandmother mentioned the struggles her granddaughter has suffered through since her birth. The caller made note of Haley’s name and referred her to national children’s charity Kids Wish Network so that she might have a wish granted. The professionals at Kids Wish Network followed through and it wasn’t long before Haley was telling a Wish Coordinator that she wanted to see Disney World.

When asked why her daughter picked Disney World for her wish, Haley’s mother, Michelle, laughed and said, “She just absolutely loves Disney—Mickey Mouse, Minnie…everything about it, she loves. It’s just what she wanted.”

 According to Michelle, from the start of the trip to coming home from Disney World, everything was wonderful for Haley and their entire family. While in Orlando, the family stayed at the Royal Plaza Hotel and enjoyed dinners every evening, thanks to the planning of Haley’s Wish Coordinator and the generosity of the sponsors.

During their four day stay in the Sunshine State, Haley and her family visited every park Haley had hoped to, including Universal Studios and Islands of Adventures, Disney’s Hollywood Studios, Epcot Center and the Magic Kingdom.

 “It was all amazing,” said Michelle. “It was such a nice break from reality. The characters and staff everywhere, at the parks and at the restaurants, treated us like royalty. It was such a wonderful trip.”

Though everything was exciting for Haley, her biggest thrill came from meeting her favorite characters in person, including Mickey Mouse, the Disney princesses, the characters from Toy Story, Barney, Scooby Doo and Shaggy.

“Everything we did was amazing,” said Michelle of the trip. “The Monday before we left, we were in the emergency room because Haley was having head pain. It has just been such a hard time for us. This was a well-needed break. She (Haley) had the time of her life.”

Tomball Magnolia Tribune
Tomball, Texas
Published: 06/22/10

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Kids Wish Network is a charitable organization dedicated to infusing hope, creating happy memories, and improving the quality of life for children having experienced life-altering situations. Kids Wish Network assists children and their families through several key programs.