Dear Laurie –
Your recent article starts with the sentence “Another heartbreaking fact about Down syndrome is that children with this condition are increased risk of developing leukemia.”. As a father of a child with DS, I can tell you this is one of the most inaccurate sentences you could write about DS or people with DS.
Contrary to the common wisdom (misperception), most “heartbreak” over a child with DS only lasts for the first weeks and months as a new parent bonds with their child and comes to grips with the diagnosis and a shattered dream of some false perfection.
For well over 90% of us parents (as survey after survey after demographic study shows), we find it to be an amazingly unexpected positive experience in our lives. I am like most parents of a child with DS. I did not chose her because I am a bleeding heart, she was a surprise diagnosis at birth. I knew little but misinformation about DS or what to expect for her. And, she changed my life. She changed my priorities, she changed how I view the world, and she changed what I want out of life. And all of these changes have made an amazingly better me. I felt special for all of these changes she helped bestow upon me, but then I spoke to tons of other parents who had a similar experience.
A more accurate lead off would have been “In addition to all of the amazing joy and value people with DS bestow upon their families and loved ones, they now have something deeper to offer to society.” People with DS rarely ever get cancers with hard tumors, which helps us learn how to fight those cancers. On the other hand they get leukemia more often (though still quite rare) and this offers clues about these medical issues. People with DS will help us gain important insight into some of the most costly medical conditions of our time (Alzheimer’s, cancer, diabetes, heart attacks, etc.). We need to listen to the clues they offer and we need to respect them. I assure you they are not a story of broken marriages and heartbreak. They are more a story of tighter, more adjusted families, deeper understanding of what it means to be a part of the human family, and joy and triumph that many never are so lucky to experience.
We are at an inflection in history where this misinformation is being eroded. It is an honor to do my small part for it, after all I am one of the lucky ones who get some of those unique benefits.