When Pam Friesen was pregnant with her first child, she had certain dreams for that child. When she found out her daughter had Down syndrome, she had to adapt her dreams

“I don’t know exactly what I dreamed for Stacey” says the Whyte Ridge resident, “but it wasn’t this.”

One in 700 to 800 children born in Manitoba have Down syndrome.

The Manitoba Down Syndrome Society is there to support parents and family.  Nov. 1-7 is National Down Syndrome Awareness Week, and the Society is celebrating with a family dinner and dance on Nov. 1 from 6 to 11 p.m. at the Waverley Heights Community Club, 1885 Chancellor Drive.

Awareness of Down syndrome is important because the genetic disorder is very common, and families need information and the opportunity to network with others who are living with it.

A person with Down syndrome has an extra chromosome, usually in every cell of the body. As a result, the person experiences delays in things like speech, cognition and physical tasks.

For them, things are more difficult. It is easier to go slower, and get more help” says Friesen. For example, Stacey, 11, only recently learned to ride a bike without training wheels, after five years of trying.  Meanwhile, her younger sister, Rachel, 8, did it in a month. Stacey learned to tie her shoes in three years.  Rachel did it in three tries.

“Stacey might not be a brain surgeon, but I’m not either, so that’s okay,” says Friesen. “We know that successes are possible and we keep the doors open and continue to learn as we go.”

Down Syndrome is a visible condition, in that many people with the syndrome have similar facial characteristics. Slightly slanted eyes and a nose and middle of the face more set back than most.  They can also be shorter, and easily put on weight with their lower metabolism.

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You alter your dreams when you learn your child has this,” says Friesen. “It is a shock.  You hit rock bottom.  But then you really can rebuilt your dreams in a different way.”

Life’s journey with a child with Down syndrome is different from life with a normal child, and that’s a pain that never goes away, says Friesen. Still, it can be quite beautiful.

The biggest obstacle for people with Down syndrome is the negative stereotype people often have of them.

“These people can live independently, get married, live their lives” she says.  “We need to see their abilities, not just the disability.”

As a strong believer in educating people about Down syndrome, the formerly shy Friesen now goes out to speak with her daughter’s teachers prior to the start of each academic year. She has also spoken to school children about what Down syndrome is and how they can help and advocate for their peers who have it.

“I want people to understand, to see her as a person.  I have also done a session for parent members. I was never an outspoken person, but when you believe strongly in something, you can do it.” she says.

Friesen and her husband Ed and their two daughters look forward to the family dinner and dance. They also invite other families to join them, to come out and learn about Down syndrome and network with other families.

They are also inviting people with Down syndrome and their families to a Manitoba Moose Hockey Game on November 29. A block of seats has been reserved.  The Society is buying tickets for those with Down syndrome and their immediate family. Other family and friends can also join them and the society will cover half of their ticket price.

On Nov. 5, Vita Health is holding a special five per cent day, when all eight Winnipeg stores will donate five per cent of sales to the Manitoba Down Syndrome Society.

For further information, call the Manitoba Down Syndrome Society at 992-2731.

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