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21st March 2017

Spreading love on World Down Syndrome Day

Hi there,

As you know, today is World Down Syndrome Day. It’s a day for joining forces with others around the world to help raise awareness about what it means to have Down syndrome and how people with Down syndrome play a vital role in our lives and communities.

We could really use your help with spreading the word.

A quick explanation of what Down syndrome is would be a good starting point, don’t you agree? Firstly, people may be interested to know that Down syndrome is the most commonly occurring chromosomal condition, with about one in 1,000 babies born with it every year, according to the World Health Organization. Also known as Trisomy 21, Down syndrome happens when a baby has three rather than two copies of the 21st chromosome. Secondly, a child born with Down syndrome isn’t sick or suffering; however, it’s true that he/she is more prone to certain medical conditions and delayed cognitive development.

As motivational speaker Karen Gaffney says in her TEDx talk: “It’s not a disease. You can’t catch it from someone. It is just something that happens.” By the way, Karen was born with Down syndrome, too. If there’s anyone who can set the record straight, it’s her.

Besides being a two-time Special Olympics gold medallist in swimming and the first person with Down syndrome to complete a relay swim of the English Channel, she’s set up a non-profit called the Karen Gaffney Foundation in Portland, Oregon. Through the foundation, she’s dedicated her life to championing the journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome and other developmental disabilities. She also works part time at Oregon Health Sciences University in their Institute for Development and Disability.

After listening to Karen’s TEDx talk, we just had to get in touch with her and ask if she’d offer some words of wisdom. Here’s what she said: “I think it is very important that people take the time to learn about the history of Down syndrome. It is important that they learn about what life was like two or three generations ago compared to what it is like now for so many of us. Because so many families, educators, doctors started to ignore all those preconceived notions about what we could not do, we were able to show what we could do.”

When Karen was born in the 1970s, the doctor told her parents that she probably wouldn’t be able to tie her shoelaces or write her name. But her parents pushed back and got the support they needed. Now, as a grown woman, Karen says that people with Down syndrome “have to advocate for ourselves and help others see that we have a life worth living. I think the best way to deal with preconceived notions is to show by the way we live our lives, that those prejudices are out of date and just plain wrong.”

In this vein, we’d like to point out, as Karen did in her talk, that grassroots efforts like the Linda Crnic Institute for Down Syndrome are increasingly being set up to carry out research into eradicating the medical and cognitive ill effects caused by that extra chromosome.

Parents of children with Down syndrome also play a big part in myth busting, as well as supporting new parents who may be feeling overwhelmed and looking for advice. Indeed, it’s the parents who often start grassroots movements.

Take mothers Debra Carlin and Lucy Newham from London, UK. They were involved in setting up Downright Excellent, a charity that helps children with Down syndrome to develop their life skills so they can reach their full potential as individuals and equally participating members of society.

Debra, whose 12-year-old son Jacob was born with Down syndrome, advises other parents to “find out as much as you can, but go with your instincts. Don’t let anyone tell you your child can’t do something.

There’s so much laughter and fun to have along the way, so enjoy your journey.”

Lucy’s son Leo is 11 and she treats his Down syndrome as a non-issue. “It’s harder, but you just get on with it. You send them to school; you take them to swimming, gymnastics, football ‒ normal activities. They’re people with their own feelings, interests and lives. The main thing about it is you have a child. What would be so bad about that?”

Both mothers think that prenatal testing could benefit parents because it gives them time to educate themselves if their child will indeed be born with Down syndrome.

There are more and more stories that serve as inspiration and put the smiles on our faces. Have you seen Melanie Ségard presenting the weather forecast just a week ago?


We could go on with more examples, but we know you get it. So what do you say? Can we count on your help? Today and every day, let’s all stand UP for Down syndrome!

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