My husband and I took our daughter to Disney World a few months back. It was one of my favorite parenting days to date. Everything was new, exciting and magical to her. But one thing was missing. Where were all the people with Down syndrome?
Weird, I know. Let me explain.
I’m from Titusville, Florida. It’s a small beach town on the east coast of Florida, about an hour drive to Disney World. Growing up, we went to theme parks regularly. Since I was from a town with few people, this is where I remember seeing people with Down syndrome.
As we walked around Disney, I was hoping to see one family among the thousands with a child with Down syndrome.
A few weeks before our Disney trip, Jen Jacob, the Vice President of the Down Syndrome Diagnosis Network invited me to apply to be the organization’s new Communications Director. She knew I had started working in Public Relations several months prior.
Despite praying for an open door to further my reach in the Down syndrome world, my initial knee-jerk reaction was: no. How would I find the time to volunteer for this position?
But Disney. Maybe it is a silly example. But a fear from that day still lingers:
What if the Down syndrome population disappears?
A new study recently published in the American Journal of Medical Genetics found that abortion after a prenatal diagnosis of Down syndrome reduces the population of those with Down syndrome by 30%. Currently, statistics show that about 1 in 792 babies are born with Down syndrome, however, the study showed that 1 in 365 pregnancies have a Down syndrome diagnosis.
With the invention of Non Invasive Prenatal screenings and more mothers finding out they are likely to have a child with Down syndrome, it is critical that expectant parents have up-to-date information and access to support.
I go back to our own horrific diagnosis experience. Where the doctor told us that our son might never feed himself or at best mop floors in a fast food restaurant. Where he said if we chose not to abort, that we didn’t have to do any medical intervention once our son was here—essentially giving us the option to let him die on his own.
No, this was not 1950, but 2014.
Can you picture someone on the fence getting that diagnosis speech? Which side do you think they’d fall on?
I can’t imagine our lives without Anderson. Yes, Down syndrome brings some complications with it, but it also brings great rewards.
I can’t think of a better way to spend my time than devoting myself to an organization that focuses on just that—the truth.
The Down Syndrome Diagnosis Network is a group of volunteers with varying political and religious beliefs who are passionate about making sure families who receive a Down syndrome diagnosis are getting current and unbiased information as well as support.
Although DSDN is a relatively new organization, they reached over 10% of families who received a Down syndrome diagnosis last year. DSDN partners with nearly 50 Down syndrome organizations to get critical information into the hands of physicians so they can better deliver a diagnosis. DSDN also supports over 2,000 families in their Rockin’ Moms Facebook groups and has started the “Rockin Family Fund” which provides welcome baskets to families and more.
Finding the Down Syndrome Diagnosis Network was a huge turning point for me in our family’s own diagnosis story. It’s where I moved from grieving, to acceptance and eventually embracing Down syndrome. I feel honored to be DSDN’s new Communications Director and sit on the board of directors.
If you follow this blog, it is likely because you find something appealing about our family’s story. Down syndrome is a big part of our story. If you care about babies like Anderson and families like ours; if you care about improving humanity and how we view and treat all people, you should care about DSDN.
“I believe in DSDN because the path of acceptance is paved with information, support and connection.”- Heather Bradley, DSDN President