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Wishing for a kingdom for their princess
Like most girls her age, Madison adores Disney's colorful cast of characters- especially the popular fairytale princesses. She also loves the purple dinosaur named Barney. But Madison suffers from Rett syndrome, a neurodevelopment disorder that affects one in 10,000 to 15,000 newborn girls worldwide, according to the National Institute of Neurological Disorders and Strokes. The rare genetic disorder robs infant girls of the ability to develop mentally past the age of about 18 months, and although she can crawl, Madison cannot speak and spends much of the time being carried or in a wheelchair. Those stricken with the disorder don't typically live past their early 20s. "She is very fragile," said Andre Boles, Madison's mom. Regardless of her daughter's disability, Boles knows Madison would love to spend time with the storybook characters from Disney- and she hopes to give Madison that pleasure with an allinclusive trip sponsored by the MakeAWish Foundation to Orlando, Fla. in October. Boles, a Camarillo resident, said Madison's situation is unique because her daughter is unable to speak and cannot say for herself where she'd like to go through Make-A-Wish. Boles said that the idea to go to Florida was born from a family trip to Disneyland, where Madison "had a blast every second she was there." Boles wants to recreate that experience for her daughter with a longer trip to one of the happiest places on Earth. She is waiting to hear back from the Phoenix-based nonprofit to find out if their family will make the cross-country trek. "Just to see her smile and laugh, it's going to mean so much to her," Boles said of the hopedfor trip. Smiles and laughs are what the family uses to get through the difficult times. A single mom raising three children- Revelle, 12, Madison and Michael, 4- Boles lives with her parents, Joe and Tina Vach. Boles, whose ex-husband moved to Oregon shortly after Madison's illness was diagnosed in 2005, said she tried to work at a full-time job but soon realized it was impossible to be away from her daughter during the day. "I knew I had to be home with my family," said Boles, who receives some financial support from the state. Much of the cost of Madison's physical therapy is also paid for by state grants. Through Channel Islands Social Services, a Camarillo-based nonprofit which provides inhome care for Ventura County residents with special needs, Gina Cantrell, a personal caregiver, helps Boles care for Madison during the week Boles said Cantrell is like a second mother to her daughter and is often referred to as part of the family. "Madison adores Gina," Boles said. Along with Cantrell's help, Boles relies on her parents- her dad, retired from a career as head groundskeeper at Padre Serra Parish and her mom, who works in the district office for the Pleasant Valley School District. "We have to attack it as a family," Vach said of his granddaughter's disorder. "We have to support one another," he said. Vach said the past few years have taken its toll on the family, but the constant support they give each other helps them deal with Madison's condition. He said the trip would go a long way for the family, especially for Madison's two brothers. "For the other kids, to be with their sister and see her so happy, this is great for them," Vach said. Boles said she wants to take the trip to give Madison the thrill of a lifetime, which, for the little girl, would be the best medicine of all.
"My children mean the world to me," Boles said. "Nothing else matters. They come first." |
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