A little girl’s dream of being a princess will come to life when Register’s Lexi Phillips enjoys a fairy tale Halloween this year, thanks to an idea found online and put into action by those who love her.
Lexi, 13, is confined to a wheelchair, suffering from 18Q syndrome, said her grandmother Georgia Phillips. This will be her last time to go trick-or-treating; she turns 14 in December.
Also known as Chromosome 18, the condition is a rare chromosomal disorder in which there is deletion of part of the long arm (q) of chromosome 18, according to Internet website rarediseases.org.
Characteristic features include “short stature; mental retardation; poor muscle tone; malformation of the hands and feet; and abnormalities of the skull and facial region …visual abnormalities, hearing impairment…structural heart defects, and/or other physical abnormalities,” the site states.
The condition doesn’t stop Lexi from enjoying life, however, and she is excited about Halloween.
“This is her last year for trick or treat,” Phillips said. She doesn’t talk or walk, and it is hard to find costumes for special needs kids.”
But Lexi will have a unique costume, thanks to her certified nursing assistant caregiver, Chelsey Hills, who was browsing Pinterest and stumbled across an idea for the perfect Halloween costume for a little girl in a wheelchair, Phillips said.
Lexi will be a frilly fairy tale princess with a glamorous Cinderella carriage covering her wheelchair.
“My son Tony (Lexi’s father) put the frame together and I put all the stuff on it,” she said.
Some may think 13 is a bit old for trick-or-treating, but Lexi is not your everyday little girl, Philips said.
With 18Q syndrome, life for Lexi and her family is different from most. “18Q affects her muscles” and other things such as vision and motor skills, she said. Her granddaughter suffers mild retardation, and “has never even held her own bottle.” She must be fed, and suffers from scoliosis as well. She will endure an operation to insert rods in her back soon, she said.
However, Lexi loves socialization and “loves watching TV. She watches Baby Einstein and Sesame Street,” Philips said.
Her father helped build the fairy princess carriage, constructing the frame in spite of his own disabilities. Tony Phillips was diagnosed with a brain tumor at age 16, and the effects from chemotherapy took its toll. Now age 30, he suffered a stroke and has limited hearing and vision on his left side, Ms. Phillips said. Both he and Lexi live with her, as Tony and Lexi’s mother, Jennifer Craun, share custody.
Her father’s and grandmother’s creative efforts brought every girl’s fantasy to life for Lexi.
“She thinks she is special because everybody smiles at her,” Ms. Phillips said. “We took her ‘trunk or treating’” at a function at the Moose Lodge, where Craun sometimes helps with activities.
Lexi was “dressed like a princess” in her wheelchair turned-carriage. “We plan on taking her to the Fall Festival at Register Baptist Church. This is her last hurrah,” Phillips said. “She is always our little princess.”
Lexi will be trick-or-treating in the Register area, she said.
And then? Much like the fairy tale Cinderella, the ball must end. When Halloween is over, Phillips plans to pack away the fantasy carriage costume “until another little girl in a wheelchair might want to use it,” she said.
Holli Deal Saxon may be reached at (9120 489-9414.