I can't believe I have not posted this yet....Brooklyn was front page news of our local paper this Sunday!!I posted it on facebook but forgot to post it here!
ANGOLA — Rett Syndrome has a local champion — the Butler family.Two children in the county suffer from the rare, genetic brain development disorder — Taylor Raab, 12, and Brooklyn Butler, 3. It is the most severe form of autism and strikes only girls.The Butler family has immersed itself not just in making Brooklyn’s life the best it can be, but in raising national awareness of Rett Syndrome.
Charlie and Kelly Bulter are joined by five area schools and Trine University in a nationwide fundraiser to help increase awareness about Rett Syndrome. Brooklyn is one of 16 team captains for Dress Up 2 Cure. A Web site at dressup2cure.org features a picture of the Carlin Park Elementary School brick marquis from last year, which says: “Dress Up 2 Cure Rett Syndrome — Team Brooklyn.” This year not only Carlin Park is participating, but so are Ryan Park Elementary School, Angola middle and high schools and Fremont Middle School. Trine University is hosting a campus wide event for Dress Up 2 Cure, which focuses on an April Fool’s Day fundraiser.
Kelly Butler said she is networking with local banks and businesses to do a “dress down day” on April 1 to further promote the cause. Those who are interested may call her at 868-4802 or e-mail to email@example.com.
“Some friends want to put on a 5K run/walk the first weekend in April to raise money for Team Brooklyn, too,” said Kelly. “As you can see, there will be a lot going on around town in April this year.” The former associate director of admissions at Trine University, Kelly took a job as program director for Girl Power 2 Cure, a national Rett Syndrome awareness organization, last year. She works from her home, which gives her more time to care for Brooklyn plus an opportunity to work toward a cure for Brooklyn’s disease.
“Rett Syndrome has taken so much from our amazing daughter and we are in a daily battle to find a cure and get our daughter back,” said Kelly. “Unless you are a family also battling Rett Syndrome you have no idea the struggles these girls go through. They are smart, beautiful girls with lots to say and do but can’t; they are trapped inside their little bodies and struggle daily to ‘get out’ their thoughts and actions.”
The Butlers use a step-by-step communicator, which allows them to record messages for Brooklyn to play at the appropriate times. The device goes to half-day preschool with Brooklyn Monday through Friday. There is also a grooved communicator that provides further opportunities. Another form of communicating with Brooklyn includes “yes” and “no” cards made from construction paper.“We have about 20 sets, and they are everywhere,” said Kelly. “We always want to give Brooklyn the opportunity to communicate with us and make her own choices.”
Brooklyn attends Circle Time at Carnegie Public Library of Steuben County with her grandmother every week and also goes to Music Together classes at the library. She recently started therapeutic horseback riding.
Kelly looks at her daughter as a typical 3-year-old.“I imagine she wants to dance, sing, run and jump just like all her friends but instead she depends on others for almost everything: feeding her, dressing her, even painting and play has to be ‘hand over hand,’” said Kelly. “I dream of a day that a cure is found and my daughter runs to me and for the first time I hear ‘I love you mommy!’”
At 16 months old, Brooklyn could crawl and said some words. However, Rett Syndrome eventually strips those abilities and replaces them with symptoms such as seizures, tooth grinding, breathing irregularities, poor circulation and abnormal sleep patterns. Brooklyn was diagnosed just days after her second birthday, which is typically when Rett Sydrome comes to light.
There is therapy, the communication devices and daily Brooklyn tries to stand and walk.“She is our little hero; teaching us about love, joy, patience and perseverance,” said Kelly.
“Our lives are full of love because of her.”Brooklyn’s smile is wide and glowing, possibly her best form of communication.“Rett Syndrome has taken away many things from our little girl like crawling, talking and feeding herself but it has not taken away her loving spirit and infectious giggle,” said Kelly.
She encourages people to visit Brooklyn’s team site at dressup2cure.org/teambrooklyn. It includes links to the Girl Power 2 Cure Web site, which provides a biography and pictures of Brooklyn.