World Down Syndrome Day: Father's tweet goes viral, inspiring thousands

Breaking News Emails

Get breaking news alerts and special reports. The news and stories that matter, delivered weekday mornings.

By Shamard Charles, M.D. and Lena Camilletti

Rosie Barnett’s parents didn’t know what to expect when they learned that their fourth child was diagnosed with Down Syndrome. They were handed booklets filled with information about the condition, but the baby girl’s future was uncertain.

Jason Kneen and Hannah Barnett of Faberstown, United Kingdom, took the diagnosis in stride — they didn’t see their daughter’s genetic condition as a burden or inconvenience, but a unique opportunity to embrace Rosie’s inherent gifts.

“Everyone was telling me she can’t do this, she can’t do that,” said Barnett. “It’s hard to hear, but the baby is here, so you just get on with it. That’s what we’re here for — to help her achieve everything she can, and reach her potential.”

Kneen was overwhelmed with the amount of information and stigma associated with Down Syndrome. The diagnosis was difficult for him to comprehend at first, but his feelings began to change as the realization that he could not predict his children’s future began to set in.

In February, Kneen posted a series of tweets about his four-year-old daughter Rosie and her Down Syndrome. He said his posts were meant to be a candid look at what it’s like to raise a child with the disorder. He also shared how his thoughts and emotions about raising Rosie have transformed over years, and reflected on the wonderful and difficult moments he and his wife have faced during this process. His posts gained attention online, getting thousands of re-tweets on Twitter.

Even Dwayne ‘The Rock’ Johnson weighed in.

“She has developed slower than the others, but she is developing and she is growing and she is clever, and she knows more sign language than I do,” he said. “So for me, there’s nothing wrong with her — she’s brilliant, she’s perfect.”

The Barnett’s experience with Rosie is shared in many ways by the loving families of people with Down Syndrome around the world.

One in 1,000 babies are born with Down Syndrome worldwide, according to the United Nations, and about 6,000 new cases appear in the U.S. each year, according to the National Down Syndrome Society. Although all people with Down Syndrome will experience some cognitive delay, the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

“The outlook may vary depending on the child, but all children are entitled to a supportive and highly structured educational program,” said Daniel Montalto, a pediatric neuropsychologist and director of the Neuropsychology and Learning Service at NYU Langone’s Child Study Center.

“A child with down syndrome often requires specialized instruction in functional or ‘real world’ academic skills. In addition to academics, it is important that educational programming include training in independent living skills, community skills, and vocational skills. With these supports in place, a child with Down’s will continue to make gains throughout his or her life,” she added.

Rosie, who is enrolled at St. John the Baptist Catholic Primary School in Andover with her three older siblings, attends classes with children in a traditional learning environment. At school, she has a one-on-one aid, and since she is currently non-verbal, she’s learning sign language.

source: nbcnews.com