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International Down Syndrome Coalition headed to Niagara Falls

By Ray Spiteri, Niagara Falls Review

Jennifer Mooradian with her five-year-old daughter Emi Gamble. (Bob Tymczyszyn/St. Catharines Standard)

Jennifer Mooradian with her five-year-old daughter Emi Gamble. (Bob Tymczyszyn/St. Catharines Standard)

Shock and disbelief to pride and joy.

Those are just some of the emotions Jennifer Mooradian has felt as a Niagara mother of a five-year-old child with Down syndrome.

“At first you feel like the bottom has dropped out of your world,” said Mooradian, who didn’t know her daughter Emi had the condition until she was 13 weeks old.

“But you quickly come to realize that all it is a label. You wish you knew then what you know now.

“Yes she has an extra chromosome, but she’s exactly how she’s meant to be. It takes her longer to learn things — to walk and talk — but she does learn to do them.

“She has a wonderful personality. She is a perfect child.”

Down syndrome is a genetic condition that can vary from person to person.

It has no cure or treatment. About one in 800 babies are born with it.

There may be physical signs such as a differently shaped head and flattened nose. A child can face physical, mental and social development challenges.

But many with Down syndrome go to university and college and hold down jobs. They get married, and make vital community contributions.

Families in the same position as Mooradian’s will converge in Niagara Falls from March 7-9 at Great Wolf Lodge as the International Down Syndrome Coalition holds a networking and get-together session.

The three-day event is meant to be a kickoff to World Down Syndrome Day, which is also recognized by the United Nations, March 21.

Last year, the worldwide coalition, based in the United States, held events at five Great Wolf Lodge locations throughout America. This year, the group has expanded it to 11, including one in Canada (Niagara Falls).

Coalition founder Diane Grover said on the first day, participants will take part in a meet and greet. On the second day, they will enjoy the water park and have a pizza party. They will enjoy the park again on Sunday, as well as have the chance to see the city.

She said last year, some locations attracted up to 200 people.

“Our families want to show that we’re not all grieving all the time,” said Grover.

“When a parent receives a diagnosis that their child has Down syndrome, very often the prognosis … is rather grim.

“But over time, that parent wants to show the world, ‘I’m OK, my child is OK. We’re happy. Life is good.'”

The organization is represented by families and volunteers. Its mission is to celebrate and enhance the lives of people with Down syndrome, as well as offer support to families. The coalition will connect parents to each other and direct them to their local Down syndrome associations.

“Nobody has to pay to be part of our organization,” she said.

Mooradian, who is president of Down Syndrome Caring Parents Niagara, a local support group for parents of children who have Down syndrome, said the Great Wolf Lodge event is more exclusive to families impacted by the condition, but it’s “nice to come together as a group.

“It’s good that we can receive up-to-date information, network and check in with other families,” she said. “It allows us to work as mentors and peers. We can share our challenges and our triumphs.”

For more information about, and to make reservations for, the March 7-9 event, visit www.theidsc.org, call Eleanor Culmone at 905-586-0661 or email her at idsc.eleanor@hotmail.com

Originally posted 2014-01-14 14:01:57. Republished by Blog Post Promoter