Putting the Spotlight on Down Syndrome
WORCESTER — Dr. Brian G. Skotko, a clinical geneticist at Children's Hospital in Boston, was scheduled to speak at the Massachusetts Down Syndrome Congress' annual conference, which was held yesterday at the DCU Center.
So he dug through his closet to find something appropriate to wear.
After rattling around, he decided to leave his special whale-emblemed Nantucket red pants on their hanger and opted instead for his dark navy slacks — the ones from Brooks Brothers that are adorned with yellow lucky horseshoes.
“They're the perfect fit for this occasion,” said Dr. Skotko, a Harvard University Medical School graduate.
Last summer, Dr. Skotko rallied those associated with the national Down syndrome community by making “a fashion statement,” after GQ magazine took an insensitive swipe at those afflicted with the illness.
An article in the July edition wrote that Bostonians were the worst-dressed in country, calling the city “a bad taste storm sewer” where fashion ideas come to “stagnate and putrefy.”
Dr. Skotko said he could take that criticism, but he bristled when the author opined that Boston suffers from “a kind of Style Down Syndrome, where a little extra ends up ruining everything.”
Dr. Skotko's 31-year-old sister, Kristin, is afflicted with Down syndrome.
“The magazine thought it was OK to laugh at the expense of kids and others who have Down syndrome,” said Dr. Skotko, a member of the MDSC board. “It was incredibly insensitive.”
Responding in a blog, Dr. Skotko fired back, “Go ahead, GQ, and mock my blue whaled-emblemed Nantucket red pants ... but do not mess with my sister.”
Dr. Skotko said the article's author, John Thompson, apologized in an email, but the magazine did not respond.
The doctor's outrage drew the attention of a number of newspapers across the country and some television news outlets, shedding insight on the illness among the public.
Those attending yesterday's conference said that Dr. Skotko's response was important in helping people understand Down syndrome and its impact on victims.
The illness is named after John Langdon Down, a British doctor that first described its medical conditions in 1866.
Down syndrome is caused by chromosomal abnormality, with victims born with three rather than two copies of the 21st chromosome.
It's estimated that one out of every 691 babies is born with it.
Symptoms vary, but victims are intellectually disabled and have lower IQs.
Over the years, the life expectancy for Down syndrome babies has risen dramatically.
For example, those born in 1983 were expected to live at most to age 25. Today, life expectancy is 60 years old.
“People with Down syndrome still face many challenges, but the future is a lot brighter,” said Daniel Forster, whose 6-year-old daughter, Hope, has the illness. “Individuals used to make all kinds of assumptions about Down syndrome, but today a lot of mystery has been taken out of it.”
Mr. Forster said Hope attends kindergarten at West Tatnuck School in Worcester and is learning to read.
He said she loves to sing, dance and play dress-up with her twin 11-year-old sisters, Tessa and Sarah, and her 9-year-old sibling, Ellie.
“People with Down syndrome can do very well in society,” said Hope's mother, Rosalie, who organized yesterday's gathering — the 28th to be sponsored by the MDSC.
At least 550 people showed up to attend the 19 workshops and talks, including those afflicted and their family members, medical professionals, educators and advocates.
Topics included updates on medical care and tips to help victims to live independently and to improve their communications skills. Special sessions were also held for grandparents and siblings of those afflicted.
In the afternoon, some with Down syndrome took part in a talent show that featured dancing, singing and joke telling.
Yesterday's conference, described by some as “a reunion,” was also attended by Ryan Langston, a 6-year-old with Down syndrome who has appeared in childrens-wear advertising campaigns conducted by Target and Nordstrom.
Advocates for Down syndrome victims said Ryan's work has helped educate people about the illness.
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