Sophia’s Story

SophiaMy name is Sophia Kay Whitten.  I am five years old and I live in Colorado with my mommy, daddy and my little brother Patrick.

My parents tell me that I am the center of their universe and that I change their lives for the better every day.  And yet there was a time when my parents didn’t know if they would “keep me” or not.

When my mommy was 19 weeks pregnant with me, my parents found out that I would have Down syndrome (three copies of chromosome 21 instead of two).  They were shown an outdated video that said there was a good chance that I would be stillborn or die before three years old.  The geneticist/counselor gave my mommy a tissue and told her that it was okay if she wanted to terminate because lots of people do.

It was a difficult decision for my parents mostly thinking of all the medical issues. Several top perinatologists told them I had no health issues and that was good news. But at thirty-two weeks the doctors scratched their heads and didn’t know how they missed a large hole – I would need open heart surgery at three months old.

The heart surgery was harder for my parents than the Down syndrome.  But we had wonderful doctors and care and I came out of the surgery with flying colors.  I was meant to be.

My daddy doesn’t see why I can’t be president. But then again he is British.  I have every intention of going to college, having a job, getting married and if I am fortunate enough, having my own extended family.  These are things that some people with Down syndrome are doing now because they are not institutionalized anymore.

I thrive at my preschool, I love to paint, read, write, dance, swim, pretend I am a chef and I love (and must have) any toy that my little brother has at all times.  I love being with my friends and family – especially my Nonna and Yeye.

But lots of kids with Down syndrome don’t get the chance to shine or achieve their potential because of outdated information provided by doctors, because of ignorance about health issues, because they don’t get the appropriate medical care in their early years, because of denial of medical care in their later years, because of pathetically low expectations, because of a society that judges us on how we look or talk and not on how we enrich or contribute to our community. So many kids like me have been swept under the rug for decades and we find ourselves the least funded condition in the US despite the fact that 1 in every 733 babies born in the US are just like me.

Please help me and my family to advocate for so many beautiful and brilliant children with Down syndrome who are simply neglected on so many institutionalized levels.  Together we will make a huge, positive difference.

My name is Sophia. And this is my story.  So far…