Over the year, many of you have had the opportunity to get to know Ella. You have seen her in the hallways, and on the playground and many of you have even become her friend. And while you have accepted Ella, some of you may have wondered why she is a little bit different. You may have wondered why she doesn’t speak very clearly or needs a little extra help here and there. This is, in part, because Ella has Trisomy 21, otherwise known as Down Syndrome.
Down Syndrome is a disorder that occurs because there is something different in the individual’s genetic make up. Genetics are what give you blond hair, or brown eyes, or your mother’s smile. Chromosomes make up your genetics. The average person has 46 Chromosomes, or 23 pairs. Individuals with Down Syndrome have 47 – they have one extra copy of the 21st chromosome. This means that there is an excess of any genetic material contained in that 21st chromosome. For this reason, people with Down Syndrome often have a flattened bridge between their eyes, or heart problems, physical and intellectual developmental delays along with many other potential health risks.
If Ella was born in 1929, she would only be expected to live 9 years. If she was born 20 years after that, she would only be expected to live 12 years and upon birth would have probably been put in a hospital or institution to live. She would have never had the opportunity to go to school at a place like Lord Tennyson nor would she have so many wonderful friends.
Today, the life expectancy of an individual with Down Syndrome is over 60 years. And it is my guess that, for Ella, those 60+ years will be filled with learning to read, going to university, living independently, working at a job that she loves and above all, being loved and accepted by the people around her. This, however, is not to be taken for granted; this did not just happen by chance but through the hard work and advocacy of organizations like the Down Syndrome Research Foundation. Not only are they consistently advocating on behalf of individuals with Down Syndrome for the right to inclusion and early intervention but they also provide services to enhance the lives of individuals like Ella NOW. Ella has had the privilege of benefiting from Speech therapy and the Early Reading Program at DSRF. This June, we want to give back and do what we can to help other families be able to take advantage of these programs and the many other services that the DSRF offers.
This Sunday, June 7th we are Running Up for Down Syndrome. Some participants will be doing a 5 km run while others, along with Ella, Ella’s family, Madame Janesse and Madame Carolyn, will be walking 1.5 km at Simon Fraser University to raise money for Down Syndrome. Will you join with us?
You can join Ella’s team in two ways:
1.) You can run or walk with us on June 7th or
2.) You can donate to Ella’s Team.
For more information visit http://dsrf.donorpages.com/RunUpforDownSyndrome2015/EllasExtremeTeam/
Let’s make a difference in the lives of individuals with Down Syndrome... you never know what they might accomplish!
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