Boston in Sunday's Paper!

Mother deals with Down syndrome diagnosis
AMY OBERLIN - amyo@kpcnews.net
Sunday, 28 March 2010
ANGOLA — He came into the world a little early, but Boston Butler is doing well.

At 6 months old, Boston has bright, shiny eyes and pudgy baby cheeks. He has also been diagnosed with Down syndrome.

“He’s already doing the cooing and giggling and smiling,” said his mother, Kelly Butler.

Boston was born 10 weeks early, weighing 2 pounds, 3 ounces, on Sept. 12, 2009 at DuPont Hospital. Seven days later, he was taken to Lutheran Hospital in Fort Wayne for surgery for a bowel obstruction and spent the next 72 days in intensive care. At one point, a potential diagnosis of necrotizing enterocolitis brought concern that Boston would survive.

“He was 7 weeks old when the doctor said they were going to do genetic testing,” said Kelly. “They were all very vague.”

The tests showed Boston has Down Syndrome, a genetic disorder that includes specific physical characteristics and delays in physical and cognitive development.

“You could have knocked me over with a feather,” said Kelly. She’s no stranger to genetic disabilities. Her daughter, Brooklyn, has a rare disorder called Rett Syndrome and Kelly herself works for Girl Power To Cure — a national organization aimed at curing Rett Syndrome.

Down syndrome is the most common type of genetic disorder; affecting more than 350,000 people in the U.S. It affects individuals of all races, ethnicity and economic levels.

“Today, individuals with Down syndrome are active participants in the educational, vocational, social and recreational aspects of our communities,” says information distributed by Down Syndrome Association of Northeast Indiana. “In fact, there are more opportunities than ever before for individuals with Down syndrome to develop their abilities, discover their talents and realize their dreams”

More teens and adults with Down syndrome each year are graduating from high school and going to college. In adulthood, many people with Down syndrome hold jobs, live independently and enjoy recreation in their communities. DSANI provides family support and social opportunities. Its mission is to be an advocate, provide information and promote acceptance and inclusion of people with Down syndrome in northeast Indiana.

DSANI representatives met Kelly at the hospital within a week of Boston’s diagnosis.

“They were great,” she said. DSANI provided toys, e-mail contacts and information. Kelly said she’s just beginning to learn about Down syndrome, but is impressed with the amazing things those with Downs have accomplished.

She has given Boston a good start with monthly physical and occupational therapy, which will increase as he gets older. There will be developmental therapists to help strengthen the infant’s core and, later, speech therapists. Boston is currently on oxygen and a heart monitor, but Kelly said they may be removed after an April 5 doctor’s appointment. Boston does not appear to have the major heart problems Down Syndrome babies often have.

All Boston’s therapists are shocked with his development, Kelly said.

“He’s kicking his legs. He’s holding his toys,” she said. Boston takes a bottle without bother and is growing well.

Kelly is used to the extra care a disabled child takes. Brooklyn has graduated from the First Steps program and into preschool at Carlin Park Elementary School through the Northeast Indiana Special Education Cooperative. Next year, she starts kindergarten, said Kelly.

Brooklyn can barely move and lost her speech as a toddler.

“She’s doing great. They have a walker at school called KidWalk and she has taken a couple steps,” said Kelly. Brooklyn rides horses at the Therapeutic Riding Center of Steuben County. She uses special computer equipment that can be aligned to the direction of her gaze, as her eyes are her most active and expressive instrument.

“If we can give her a way to communicate intelligently, she’s just like any other 5-year-old,” said Kelly.

With a positive attitude, Girl Power to Cure and DSANI, Kelly and her children are moving toward the future.