In vitro, Kaitlyn suffered a stroke. Her mom, Jacqueline, explains, “When I was pregnant, they did an early ultra sound. They believed the baby had a disorder called ‘Dandy Walker Malformation.’ This disorder is basically known as water head where the brain does not drain correctly and the ventricles close. It was only after Kaitlyn was born we learned she had suffered a stroke while in the womb; not the disorder they had originally thought.”
Labeled as having cerebral palsy, Kaitlyn walks with assistance of a walker. She has spasticity on the right side of her body; her right hand has limited use. She is vocal, but non verbal, and is assisted in communicating with a “speech board.” It’s a small computer like device that has photos and words programmed into it. Kaitlyn can hit a word or photo to communicate with those around her what she needs or wants to say.
“She definitely knows what she wants,” assures her mom. “She has cognitive skills, and is aware of the world around her in many different ways.”
Jacqueline and Martin Dix lived in Danville, V.A. during Jacqueline’s pregnancy, but came to Chapel Hill for the delivery because they knew Kaitlyn would need specialized care. Currently, they live in Holly Springs and their quest for medical care for Kaitlyn has moved outside of North Carolina, outside the United States in fact. Kaitlyn was last treated at a clinic in Costa Rica, where advances in stem cell treatments have outpaced those here in the U.S.
Jacqueline explains, “This past April we went to Costa Rica for stem cell treatments using cord blood.
Because I didn’t bank Kaitlyn’s own cord blood after she was born, we were not eligible for this type of treatment here in the U.S. Duke is doing a cord blood study right now, but we were not able to qualify.”
The cord blood that Kaitlyn received was from donations. “This contains no blood products,” Jacqueline says. “They just extract the cells from the cords post delivery. This is the stuff that would have been just thrown away after delivery anyway.”
Soon after Kaitlyn’s first treatment, her mother was amazed. She says, “It’s like watching a miracle unfold, a miracle in the making.”
Since the treatment seven months ago, Kaitlyn has gained more mobility and her mother says there is an improvement in her cognitive abilities as well. “She’s more in tune to what’s going on around her, and she’s using her talk device more to string together more words. She has become more expressive.”
Martin and Jacqueline are currently working diligently to fundraise for the $12,750 they need to take Kaitlyn to a sister clinic in Panama in January for a second round of stem cell treatments. The family is inviting children, young and old, to participate in an “enchanted story telling event” featuring Santa’s Woodsman, E. Gale Buck. A “Day with Santa” will be held on Saturday, Nov. 13, from 1 p.m. until 3 p.m. at the Hunt Community Center on Stinson Avenue in Holly Springs in Room 10. There is no admission fee, however, donations will help support Kaitlyn’s next round of stem cell treatments. Anyone interested in attending can register at email@example.com. The Kaitlyn Dix Medical Fund has been established at First Citizens Bank, 1244 North Main Street, Fuquay Varina or 1825 Kildaire Farm Road in Cary. All Aboard Pizzeria and Ice Cream in Holly Springs will hold a “Community Night Fundraiser for Kaitlyn” on Thursday, Dec. 16, from 5 p.m. until close. Ten percent of the evening’s proceeds will benefit Kaitlyn, and there will be a 50/50 raffle.
For more information visit Katilyn’s Stem Cell Journey on Facebook.