Various initiatives to raise world awareness of Down syndrome

Publié le : 25 October 2013

 Down syndrome has taken centre stage in all four corners of the world since last week. From the State of Kansas (United States) to New Delhi via the State of Tennessee (United States), numerous events have taken place to raise awareness of this genetic disorder. Ranging from "Step up for Down Syndrome", which brought together 3,000 persons in Memphis for various activities, the "SMILE on Down syndrome Buddy Walk" which organised a walk for Down syndrome with people with this disorder sporting red T-shirts emblazoned with "Keep calm, it’s only on extra chromosome": ndlr], or a trek organised in India to meet young Israeli and Indian people with Down syndrome, the aim was the same: " We want to show that people with Down syndrome are no different from the rest of us", "raising awareness for the support and inclusion of our children", "getting to know Down syndrome", and ensuring that "people are aware of ways in which people with Down syndrome can be integrated in the community".

There are numerous testimonies to the diagnosis of Down syndrome. We have to understand, explained the father of a Down syndrome child that "the diagnosis does not tell us everything about the child […] the child is far too beautiful and complex for a diagnosis to tell us everything there is to know about him or her […] Yes, my son has Down syndrome but Down syndrome does not define him". A mother recounted that the "predictions of doctors or therapists have not always been accurate": "With training and support Eddie has managed to do much more than we were told he would". Finally, other patients stressed the need for their children to be welcomed, helped and supported in society.
And yet, just a few days later, on 24 October, the "Independent Ireland" newspaper published the results of a survey conducted by Down Syndrome Ireland which showed that over one hundred children with Down syndrome have had their medical cards taken away from them, in a totally discretionary manner despite the fact that these cards gave them access to numerous consultations needed to treat the health problems often associated with Down syndrome.

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