This year scientists announced a major breakthrough and a possible gene therapy for Down Syndrome. In cells taken from a person with Downs, they were able to silence the extra 21st chromosome. This may mean a targeted therapy to help fix the health and cognitive problems caused by have that extra bit of genetic material.
Reactions were mixed. Some thought that people with Down Syndrome are perfect as God made them and we should do nothing to change them. I understand this reaction very well. We live in a society that kills 90% of people with Down Syndrome before they make it out of the womb. It is entirely natural to want to protect those with Downs because they are wonderfully lovely people that, frankly, the world needs more of, not less.
I saw this breakthrough a bit differently. I found the news exciting and full of hope. I too believe that God made those with Down Syndrome as perfect people, but they are not defined by their chromosomes. They do have an extra that causes all kinds of problems from cognitive difficulty, to heart defects, to cancer. I feel it is important to treat these issues. We would not hesitate to treat cystic fibrosis or Huntington’s disease or even autism if there was gene therapy available.
That being said, I find it hard to comment on these very important discussion because I do not have a special needs child. I look to other parents of special needs kids to help guide me.
This piece, Down Syndrome Research, Hope for My Daughter, by Leticia Velasquez at Amy Julie Becker’s Thin Places blog is so fantastic I had to share it with you. Leticia is the author of the blog Cause of Our Joy, co-founder of KIDS (Keep Infants with Down Syndrome), and the editor of A Special Mother is Born. She also has a daughter, Christina, with Down Syndrome who has regressed over the years. Christina no longer speaks. Leticia hopes this breakthrough will help bring her daughter back:
My daughter is trapped by Down syndrome’s confused messaging in her brain. Do I love her as she is, even if she never speaks again? Of course I do! Do I want her to speak with all my heart so that she can find more happiness in the world, in friendships, reading, and fulfilling work?
Of course I do.
So, excuse me if my heart skips a beat when I hear about medical breakthroughs which might bring back my daughter, my true daughter to me. She is not the sum total of her chromosomes. Christina is far more than that, but she is deeply affected as we all are by her genetics. They do not affect her soul, but who else but those of us who love her will see the beauty in that soul if she can never speak again?
Beautiful. I share Leticia’s hope that someday all people with Down Syndrome can live the fullest lives possible. I think gene therapy may be a step in that direction.