Down's Syndrome Awareness Week - a personal perspective

Posted by Tim Heyes on 29-Mar-2017 11:14:50
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As well as being one of the co-founders of iDetailAid and being immersed in the world of pharmaceutical marketing and technology, I am also what you might call a "Down's Syndrome ambassador".

I am a dad of two - Austin, who is 6 and Laurie who will be 5 in a  couple of weeks. Austin likes Star Wars, dinosaurs and spending hours playing lego. Laurie loves dressing up, dancing and watching Trolls as many times as possible in one day. Laurie also has Down's Syndrome.

 

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Last week was Down's Syndrome Awareness Week with World Down's Syndrome Day falling on 21st March.

This is a very important part of the year for me, my family and the Down's Syndrome community as a whole as it gives us an opportunity to not just raise money but, importantly, awareness of the Syndrome.

Last year I embarked upon a challenge which saw me running and riding bikes over Awareness Week to raise money for my local support group as well as the Down's Syndrome Association.

This year my wife, Hannah, and I were kindly invited to two local secondary schools to take part in their PSE (Personal & Social Education) day and run a series of workshops for Year 10 students.

During my career, I have spoken at conferences to rooms full of delegates, pitched to investors and VCs and negotiated contracts with fearsome procurement departments.

I can honestly say that presenting to groups of 14 and 15 year olds ranks up there with one of the most nerve wracking things I have done. 

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I needn't have worried - the staff and pupils at Pontllanfraith and Oakdale comprehensives (Islwyn High School) gave us an incredible welcome and got stuck in to the workshops, even when made to stand up in front of their classmates and play Chinese whispers with a mouthful of marshmallows, or try to open sweets while wearing gardening gloves.

It was heartening to see that far from considering this sort of education irrelevant to them, these young people engaged fully in the sessions and went away more informed than when they came in.

Here are a few facts that were communicated in our workshops:

  • Down's Syndrome was first identified in 1866 by British physician, John Langdon Down
  • In 1930, the average life expectancy of a child with Down’s Syndrome was 8 years. Today it is more like 65 years.
  • Until as late as 1978, most children with Down’s Syndrome weren’t educated at all
  • There are three types of Down syndrome: trisomy 21, translocation and mosaicism
  • Trisomy 21 accounts for 95% of cases of Down's Syndrome
  • Trisomy 21 is caused by a person having 3 copies of chromosome 21 (instead of the usual 2) 
  • Around 2 babies are born with Down’s syndrome in the UK every day
  • Down syndrome occurs in people of all races and economic levels
  • There are more than 4 million people with Down’s Syndrome worldwide
  • People with the syndrome will have a cognitive delay. The learning disability affects a person’s ability to learn, it does not mean they cannot learn.
  • People with Down's Syndrome are not all alike although they can share similar characterstics

Now that Down's Syndrome Awareness Week is over for another year we have had the opportunity to look back and reflect on what a success it has been for us personally and this sentiment has been echoed nationally as coverage and activities become more and more mainstream.

The hope is that throughforward-thinking initiatives such as the PSE workshops arranged by Islwyn High School, we can help demonstrate that children and adults with Down's Sydrome are unique individuals with personalities, feelings, hopes and fears - just like everyone else.

For more information please contact your national or local support organisation. In the UK, please visit https://www.downs-syndrome.org.uk/

 

Topics: Community

About the author

Tim is an experienced IT professional with a passion for technology. He has worked in roles enterprise software development and deployment in a career spanning 16 years.

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