Wednesday, June 25, 2014

Never Alone.

We are some of the lucky ones.

When Matt and I received Ellie's Down syndrome diagnosis, we received it from a genetic counselor who used gentle words and who offered us up to date information on life with Down syndrome.

I spent 15-ish minutes on the phone with our genetic counselor, Sarah.  She called back the next day to give me a ton of information to write down, as she promised.  A few weeks later, she called again with full amnio results and to see if there was other information we needed.

And still, we felt alone.

We cried.

But at least we knew that there were resources and hope.

Termination was offered one time by the genetic counselor.  I never felt as though she was pushing us into that decision.  When we said we would be taking Ellie home, she never mentioned termination again.

For many families receiving a diagnosis, the kind genetic counselor providing current information is far from reality.

As regular readers know, Ellie's start was a rocky one with two surgeries before she was six months old.  But armed with good information, we knew that the rough start wouldn't prevent her from having a great life.

I received an email from Lettercase this week.  Lettercase provides current, medically reviewed information on Down syndrome for medical professionals to give patients.

"We're thrilled to share that we have funding toward providing 2,000 copies of the Kennedy Foundation's "Understanding a Down Syndrome Diagnosis" book at lettercase.org to each of the major testing companies currently offering the new non-invasive prenatal screening tests."

They are currently working to compile a database of both supporters and stories, partnering with Tim Shriver.  Check out his letter here.

In order to learn more, check out the #NeverAlone campaign.  Even if this blog is your only connection to Down syndrome and the prenatal testing world, I urge you to share what you've learned through our story.

More cute Ellie stories coming soon.  She's a little under the weather right now, so I'll leave you with a photo from earlier in the week from Instagram.




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