The funny thing is, I’ve always had this unexplainable foreboding that I would develop Alzheimer’s disease. I guess that’s not so funny, is it.
The fear lurks in my mind, so much so that I visited a research facility once, thinking I’d be able to learn if I was “predisposed.” Turns out, the facility couldn’t do that.
Recently, I got an answer. My mom is starting to struggle with memory loss. Sure, we all do as we age. But a few incidents emerged that whispered, “Wait. Be still. Listen. Pay attention to me. This is more than lost keys.”
Suddenly, the possibility of Alzheimer’s smacked me in the face.
Except, this was its second, ferocious smack. The first was the day I learned my son, Charlie, who is only 4 years old, is likely to develop Alzheimer’s disease at the same time I do because he already has Down syndrome.
Down syndrome and Alzheimer’s. Wow. My fears sprang to life before my eyes: My mom and my son, two different generations, about to head up the same frightening, rocky, formidable mountain.
That’s why I’m talking to you right now, why I’m writing this when only a handful of people know about my mom’s condition. I asked her if I could. She almost scoffed as she said, “Of course!” She knows why this – what I’m saying – is so important.
Because the link between Alzheimer’s disease and Down syndrome is unavoidable and unequivocal. Down syndrome is the existence of a partial or full copy of the 21st chromosome. Alzheimer’s occurs on the 21st chromosome.
This is real.
It’s already happening in my family. It can happen in yours.
An evil, selfish monster is intent on robbing your loved ones of the not-so-indelible-after-all images of children – grandchildren – giggling and playing on the same beach you did.
This suffocating blob of “science stuff” is determined to rip away the ability for a perfume to conjure a vision of my mom, kissing me goodbye as I bolted out the door for school, already late.
We have an army, poised to attack this monster. Researchers are on the cusp of life-changing, life-saving discoveries. That is real, too.
Except those same researchers are standing helplessly, empty-handed. The funding isn’t enough. Researchers cannot continue on passion alone.
And so, it’s up to us. Now. These may be all the warnings we’re going to get. It’s time to build our resources and forge against this horrible, awful disease on all our horizons.
In the meantime, as we take on Alzheimer’s, we will give people with Down syndrome, like my little Charlie (who right now only cares about Elmo and the Wheels on the Bus), some real hope.
Hope for treatments that don’t cure Down syndrome but rather help Charlie with just enough of a cognitive push to understand why we lock our doors at night. Why we don’t talk to strangers. Why it’s important to be able to remember how to do that job that earns him that paycheck that allows him ever-increasing independence.
Money. Turns out money can absolutely buy my child’s future. It may be too late for my mom. We may be at only the beginning of a slow and horrible devolution. Or are we?
I’m never giving up. What if it’s never too late? What if what we do in celebration of World Down Syndrome Day, actually matters?
Let’s do this.
– Thank you Maureen and her amazing family for sharing their story. To do more to fight off the “evil, selfish monster” consider a donation to LuMind Research Down Syndrome Foundation. Donations from March 18 through March 21, 2015 (WDSD) will be matched 3:1. Yes, let’s do this!