Down syndrome addressed; DCU Center parley touts 'champions'.
WORCESTER -- Amy Polewarczyk of Sterling had difficulty sleeping Friday.
The 15-year-old girl with Down syndrome had eagerly awaited the hustle and bustle of Saturday's 30th annual Massachusetts Down Syndrome Congress at the DCU Center.
After exchanging pleasantries, Amy was in a hurry to return to a breakout room where she and dozens of other young people with Down syndrome participated in activities. She didn't need her folks by her side.
Her mother, Catherine Polewarczyk, said Amy has come a long way and has "blossomed'' thanks in part to MDSC.
When the girl was 13, and at her first conference, the mother recalled that Amy clung to her.
As MDSC has become a bigger part of the family's lives, particularly through Amy's participation in the monthly Advocates in Motion program in Newton, Amy has learned there are no limits to her hopes and dreams, said her mother, who quit her job as a teacher after Amy was born to concentrate on helping her develop and to advocate for her.
Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
Children with Down syndrome have challenges in many different areas, including developmental delays and problems with their heart, ear, nose and throat. They're confronted with low muscle tone and delays in their motor skills, said Dr. Errol Mortimer, a pediatric orthopedist at the University of Massachusetts Memorial Medical Center in Worcester.
Dr. Mortimer and Dr. Beverly N. Hay, chief of the division of genetics in the department of pediatrics at UMass, hosted an exhibit table for their services for people with Down syndrome.
The doctors see patients in tandem, and they are trying to expand that to include other physicians at UMass who care for children with Down syndrome -- "in one neat package,'' Dr. Hay said.
"We feel like we're inching forward every week, every month -- but we're getting there,'' Dr. Mortimer said of the goal for a multi-disciplinary clinic.
"We have a new advocate in (state) Sen. Richard T. Moore, (an Uxbridge Democrat) who's been helping us out. He's lobbying on our behalf. Hopefully that'll kick-start the project a little more.''
The Massachusetts General Hospital Down Syndrome Program in Boston is multidisciplinary, he said, but having the services available in Worcester would be more convenient for people from communities such as Pittsfield or Springfield.
But Worcester needs "a banner or flag'' for its program, he said.The life expectancy for people with Down syndrome has increased dramatically in recent decades -- from 25 in 1983 to 60 today, according to the National Down Syndrome Society.
"It's amazing what happens when you provide good care. We didn't do that a generation or two ago,'' said Dr. Hay, adding that being more aggressive about making sure patients stay healthy, and giving people with Down syndrome the opportunity to be included in school and work "can keep them going a lot longer -- just like everybody else.''
An awards luncheon featured the individuality and determination of MDSC self-advocates, all of whom spoke to the "champions'' theme of the conference, which was based on the "Boston Strong'' mentality of coming together to overcome challenges, and the positive sense of community pride that has developed as a result, organizers said.
The first of five "champions'' to speak, 35-year-old D.J. Russell of Worcester, told attendees he was involved with a training group to help people with disabilities get jobs.
The group goes into the community and shows people how to write resumes and present themselves in a professional way, among other things, Mr. Russell said.
"Because I'm advocating for myself and others, I believe I am a champion,'' he said.
Senate President Therese Murray was cited as a "champion'' because she was instrumental in helping advance the passage of An Act Relative to Down Syndrome Genetic Test Results, said MDSC Executive Director Maureen Gallagher.
The law, signed on June 22, 2012, requires the state Department of Public Health to ensure that medical providers give new and expectant parents up-to-date, accurate information about Down syndrome and information on how to connect with resources.
New advances in prenatal testing have led to a shift in an increasing number of people getting a prenatal diagnosis, and MDSC has seen "a big increase'' in the number of prenatal referrals to the organization since the law's passage, Ms. Gallagher said.
Contact Brian Lee at firstname.lastname@example.org
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|Publication:||Telegram & Gazette (Worcester, MA)|
|Date:||Mar 23, 2014|
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