It’s been a long, bittersweet journey for the DeLuca family. Caroline DeLuca, their fourth child was born with conditions that were misdiagnosed time after time by hospitals and doctors. Born as what appeared to be a healthy baby girl, weighing eight pounds, eight ounces, Caroline’s initial tests were good until eight hours later when she turned blue. By the time the nurse arrived, the baby's color was restored, and after 18 hours of observation the hospital concluded that the "blue" had been just a curtain shadow. Only it wasn’t. In the next six days, the baby turned blue 50 more times.
As Caroline grew, she couldn’t walk, talk or sit up straight. By the time she was four months old, she had braces on both hands.
Through the years, Elizabeth DeLuca researched and fought hard to get her daughter into state-of- the-art treatment programs such as hyperbaric oxygen treatments at UTMB-Galveston which helped restore oxygen to her brain and removed toxins. Later a neurologist discovered that Caroline had low levels of "5-methyltetrahydrofolate" — a form of folic acid that the brain needs to function properly. This was good news because the cancer drug, leucovorin, now replaces the missing folic acid in Caroline's brain.
But, the fact remains that today, Caroline is wheelchair-bound, and does not speak at all. She uses intonation to communicate, so her mom kindly agreed to this interview.
While surely frustrating and maddening to the family, this is not a story about sadness. It is a story about the sheer will of the human spirit. It’s about 13-year-old Caroline DeLuca who lives life forward, and spreads sunshine to those around her.
Caroline starts her day like most teenagers, with a shower. Then unlike most teenagers she takes her medicine and eats breakfast through a feeding tube, and then is off to school. Caroline goes to The Caroline School for Special Children at Easter Seals. Thanks to her mom, Elizabeth, this is a perfect environment for Caroline, and other medically fragile kids. Here, Caroline can learn at her own pace while going on field trips and enjoying art, drama, and her favorite class, music. Elizabeth says Caroline loves her teacher and the opportunity to strum the guitar while Miss Stephanie does the chords.
Caroline loves music and the movies that promote them. Elizabeth DeLuca said, “Caroline’s favorite movies are Mama Mia! and Hairspray. These are Broadway shows that recently came to Houston, and Caroline attended them both. Not a day goes by that Caroline does not watch at least part of Mama Mia! on her ipad. The ipad is so great because she can use the touch screen to select her movies by herself.” Caroline also loves music by Miley Cyrus, music from the 70’s and Country and Western.
But don’t get the impression that Caroline spends all her free time watching movies and listening to music. She also loves sports. Number one being challenger baseball – she loves it – and loves hanging with her buds. Her second favorite sport is swimming. In the water, Caroline is free to move and play without her wheelchair. This ultimate freedom levels the playing field, and allows her to be like her friends.
Caroline loves her family’s pets. Jake, a yellow lab from the Southeast Texas Lab Rescue is gentle and kind,” said Elizabeth. “He adores Caroline. He likes to lay down with her, and with assistance, she throws the ball for him. Darby, a miniature dachshund, is cautious around Caroline. At seven pounds she knows a happy pat could spell trouble. When Caroline falls asleep though, Darby heads over to cuddle in and fall asleep with her.”
Caroline, “The Monkey.” When asked about Caroline’s sense of humor, Elizabeth said, “She loves to play tricks on her sisters and her parents. A gleam in her eye and a sideways grin means mischief. She will snatch something and toss it or grab food from your plate and then laugh!!! We call her 'the monkey.' She loves slapstick humor the best and pratfalls or pretend accidents make her laugh. She has also occasionally pretended to have a seizure just to freak us out.”
Caroline’s Slime Green Wheelchair “We tried to talk her out of the slime green one, but slime green it is. She even has a lime green backpack on the back of it,” Elizabeth commented. “As a little girl it was purple and turquoise, and then around seven years-old she got one that was hot pink. This current wheelchair is more involved as she has regressed some. It has tilt- in space-recline capabilities. And a headrest and chest harness are needed for the severe seizures she now has due to the epilepsy.
Caroline has appeared on ABC’s Good Morning America, and numerous articles have been written about Elizabeth and Caroline’s journey through the maze of medical treatments. See http://www.houstonpress.com/2000-04-20/news/no-more-waiting-room/
For more information on Caroline School click here: http://www.eastersealshouston.org/Children/the-caroline-school-a-day-program.html
