Wednesday, March 21, 2012

Celebrate World Down Syndrome Day

Today is the 7th anniversary of World Down Syndrome Day and it is the first year that it is officially recognized by the United Nations. Across the globe family and friends are celebrating our loved ones who sport designer genes. DS or Trisomy 21 means that there are 3 chromosomes where typically there are 2 on the 21st set. Hence, 3-21 or T-21. March 21st has been chosen as the day to celebrate Down syndrome for this reason.

This is Sophie's karyotype, or map of her chromosomes. Look closely to see the trisomy of #21.

The timing of this celebration is especially important to us as it marks the anniversary that our family learned that the child I was carrying had Down syndrome. We were shocked and scared but we chose to keep our precious gift. On that day we decided to name her Sophia, which is Greek for wisdom.

A big part of my job as her advocate is to educate. Are you aware that 90% or higher of prenatally diagnosed babies with Down syndrome are aborted? In some places like the former Soviet Union, children born with disabilities are almost always refused at the hospital and are sent to live out a miserable and often short existence in an institution. Organizations like Reece's Rainbow and Russian Orphan Opportunity Fund (ROOF) work hard to change the fate of these discarded children while Denmark boasts that they are working towards a Down syndrome free, perfect society.

Today, somewhere a pregnant woman is being given the news that her child has Down syndrome. Many will pressure her towards termination. Through connecting to families like ours, she can learn the whole picture. She can be given hope that she can do this and that she will be immediately accepted by the greatest extended family, the special needs community.

Raising Sophia has been an honor and a privilege. She has been our teacher and her lessons have been of unconditional love, acceptance, patience, respect, kindness, perseverance, and joy. By sharing our family with the world, it is our life's mission to educate others that disability does not mean the end of the world. People with special needs belong in our community just as much as everyone else and they have so much to offer if we would just open our hearts and minds. We chose Sophie and we have never looked back.

Please watch this absolutely beautiful video created by my sweet friend Diane. She stands strong in her convictions and I respect her for it.


Ana said...

ooo is so beautiful!!!

Astrin Ymris said...

The "Denmark War on Down's Syndrome" story seems to be a internet hoax. If Googling for News results on a story brings no pertinent results, there's nothing there.

JRS said...

Now ffffffade away.