This is my little sister.
She was born on Christmas Day, the youngest of six children. She had Down syndrome. Doctors said she would never amount to much and suggested that she could be aborted or sent away to live in an institution so my parents wouldn't be burdened. My parents disregarded that advice.
She endured multiple open-heart surgeries before she was three years old. She came through that and grew into an amazing human being. She was an accomplished speaker, advocate, and actor. She has an IMDB profile. She graduated with honors from high school and attended college classes. She learned to drive, got married, and lived a full, independent life. She was an inspiration to tens of thousands of people who attended her speeches.
She was an incredible daughter, sister, aunt, and wife, and a dear friend to countless people. She passed away recently and left a huge hole in so many people's lives. As she once said, "People who have Down syndrome can change the world. Being smart is not always what makes people happy. Loving and being loved is what makes people happy." She was so happy, and she brought so much happiness to others because she loved (and was loved) unconditionally.
I wish you had met her. You might not have murdered your baby.
This week, my wife and I made the very difficult decision to terminate the pregnancy due to Trisomy 21.
The choice was not made lightly. We really appreciate all of the personal stories that you guys shared with us, especially the unconditional support we received from fans with no matter what we decided.
I know some of you may be very disappointed to hear this news. We are devastated. This has been extremely traumatic for both of us, especially Ashley.
She underwent the procedure earlier this week and is on the mend. Thankfully, everything went smoothly, but emotionally we are drained.
Trisomy 21, also known as Down Syndrome, is caused by an extra chromosome. It is caused by an error in cell division, like a glitch. The odds of a baby having it is 1 in 1000.
When I first confronted this news, I was shocked but optimistic. If they’re a little slow intellectually, then we’ll make it work. I signed on to be a parent, come what may…but I just didn’t fully understand what Down Syndrome entailed.
Once we made it public, it became clear that MOST people don’t know what Down Syndrome entails (and no, it’s not the same as Autism):
50% of babies with DS have heart defects. 75% will have hearing challenges. Over 50% will have vision problems. Impaired immune function, developmental disabilities, learning disabilities, delayed physical development, poor muscle tone, structural issues with face, decreased lifespan, etc…Sadly, the list is long, feel free to look it up…Down Syndome isn’t a “blessing”, it is objectively shitty from a health perspective.
I didn’t realize just how rough it is for the child, let alone the family…more often than not, they would be fully dependent on others for the rest of their life.
The miscarriage risk is also close to 50%, which made matters worse…they may never see the light of day and it puts Ashley further at risk.
We spoke with doctors, friends, family and genetic counselors and learned that up to 90% of women terminate their pregnancy after learning the baby has Trisomy 21.
This was WAY higher than I expected, I thought it would be lower given that I hear so many say they kept or would keep the baby. I believe that’s because most terminations happen privately, it feels shameful. A lot of judgment being cast.
You never think you’d be in this type of situation until it happens to you and then things change.
To all of my fans who have weighed in on this topic who have Autism, Down Syndrome or any other conditions…we appreciate you. You matter a lot and we’re glad you’re here. I commend you and your families for having the strength and courage to push forward.
As for us, we made a difficult decision that we believe in the long-run will be beneficial for our family. Thankfully, we had a choice.
It will take a little time to move on, but we are excited to try again in the future and hopefully have a better outcome.
Love you guys & thank you for understanding. ❤️