Local 7-year-old fights to find cure for Rett Syndrome

Buzzing through the store, 7-year-old Carly Springhart moves around pots full of felt flowers and paper ones glued to popsicle sticks, strategically placing them where she thinks they will attract the most attention from customers. Brooklyn, her 6-year-old sister, tries to catch up, taking hesitant steps in her butterfly leg braces and reaching out to grab her mother’s hands.

Carly is on a mission to find a cure for Rett syndrome, a debilitating neurological disorder that mostly affects girls; her sister Brooklyn one of them. On the surface, her summer activities look like any other soon-to-be second grader. She went to summer camp, and visited her grandma. Little do people know on those visits, she’s been coloring flowers and popsicle sticks, crafting an informative flyer about Brooklyn, and making dozens of photocopies.

Rett syndrome, though as common as ALS, didn’t have a viral ice bucket challenge to raise awareness about it, and is still not widely known. Brooklyn, who can only walk a few steps before being worn out, has it lucky compared to most, her mother Andrea said. Though most girls with Rett are wheelchair-bound, Brooklyn isn’t and is often crawling around the house trying to keep up with her energetic sister. She loves being read to, so her family recorded their voices and placed little buttons on the bookshelves around the house at her eye level since she can’t vocalize her wish to be read a story to. Brooklyn has the ability to chew and swallow her food, whereas most girls affected by Rett are tube-fed, and she knows a few words of sign language she’s picked up from her mom.

Maison Baby is located at 485 S. Orlando Ave. in Maitland. Stop by during the month of August to pick a flower from Carly’s Garden of Hope to raise money to find a cure for Rett syndrome. Visit girls.girlpower2cure.org/brooklynspringhart to learn more.

For Trish McFarlan, mother of two, whose kids attend Monarch Learning Academy where Carly goes to school, it was an obvious decision to help Carly with her project. Learning about what Brooklyn and so many girls face, how they lose the ability to speak, walk or use their hands, she felt she had to get involved. So McFarlan, who started working in February at Maison Baby, a children’s shop in Maitland that sells gear and toys for newborns up to 10 year-olds, proposed it as a venue for Carly’s Garden for a Cure. Maison Baby will be running the fundraiser over the month of August, accepting donations, and giving out Carly’s hand-crafted flowers, a symbol of Girl Power 2 Cure, a nonprofit that raises awareness of Rett and funds research for a cure. GP2C offers stores the opportunity to host a garden where customers can buy a flower for $1, $3 or $5 and all money raised goes to finding a cure for Rett.

“It’s so great seeing a kid at her age have such a big heart,” McFarlan said. “I would want people to do the same for my Grayson.”

McFarlan said Carly has taken this project very seriously. Andrea says Carly is always asking, “How can we help the scientists rush this?” referring to finding a cure for Rett. Being a big sister is a full-time job for Carly, and she dreams of the day when Brooklyn will ride a bike with her. Andrea said it will take a lifetime of little conversations with Carly, Brooklyn’s best friend and biggest protector, to explain the devastating diagnosis they received when Brooklyn was only a year old.

“Brooke has such a sweet, gentle spirit, she’s only grumpy if she’s hungry or tired,” Andrea said, as she strapped Brooklyn into the stroller and started playing top-40 radio. Apparently, Brooklyn doesn’t like kid tunes, she prefers jamming out to Katy Perry, One Direction and Enrique Iglesias.

The Springharts are hopeful that within Brooklyn’s lifetime, a medication will be found that will reverse the symptoms. According to the GP2C website, once protein levels return to normal levels, symptoms subside, making Rett a potentially reversible disorder. In 2014, Andrea and her husband, Jeremy, raised $5,375 when she ran the Disney Princess half marathon for GP2C. Andrea said raising a child with Rett is an ongoing learning process as Brooklyn just started using an eye-tracking system that tests her cognitive abilities.

For now, Carly is busy planning the garden for a cure for her sister. Sporting a pink and yellow GP2C T-shirt that she just received in the mail, she pushes open the shop door, one step ahead of Brooklyn.

“I’ve got big plans, big, big, BIG, plans,” she exclaimed.