How Our Son with Down Syndrome Helped Start a National Non-Profit

Note: People with Down syndrome have three copies of their 21st chromosome, thus March 21 (3/21) is designated as World Down syndrome Day.

father and son with new child with Down syndrome

‘Your son has features consistent with Trisomy 21.’

I’ll never forget hearing those words from our pediatrician a little over thirteen years ago. (I’ll also always remember our OB/GYN telling us “I’m sorry,” instead of the customary “Congratulations!” the following day.)

Like anyone receiving unexpected news, I was shocked, worried, anxious, nervous, and a mix of other emotions.

Noah was our firstborn son. I wasn’t sure I even knew how to be a parent, much less the parent of a child with a disability. (Be sure to read my comment about this phrase at the bottom of this post.) The hospital sent us home with essentially no resources, leaving us to face the unknown of being the parent of a child with Down syndrome by ourselves.

What would Noah’s future be like? What would our future be like?

I had no idea.

Relationships Bring Hope

Before having Noah, I don’t think I had ever met anyone with Down syndrome. Even though we had a supportive group of family and friends, I didn’t know anyone who really understood how we felt.

Shortly after bringing Noah home from the hospital, we got connected with a family in the Houston area who had a child with Down syndrome. They invited us into their home, and we met their son, Seth.

We watched as their family did the everyday things that most families do: laughed, played, and just hung out. Their home was full of joy, and they didn’t seem sad.

Meeting a parent a little further along in their journey of raising a child with Down syndrome was such an encouragement for us. Finally, we were with someone who had been where we were and was able to get a glimpse into our future, and the future was bright.

One of Life’s Greatest Gifts

Noah is thirteen today, and I’ve learned a lot since the day we received his Down syndrome diagnosis.

For starters, I’ve learned that Noah (and people like him) are not disabled at all; in fact, quite the opposite. Noah is able in so many ways. His life has impacted thousands (if not millions) around the globe, and there would be no Hope Story without Noah.

My life is better in countless ways because Noah is in it; I wouldn’t change one single chromosome about him. With complete integrity, I can say that our son with Down syndrome is one of the greatest gifts of my life.

Using Our Story to Help Others

One of my life goals is to help more people know what I already know: that having a child with Down syndrome isn’t a sad story; it’s a Hope Story.

In 2018, our son, Noah, inspired us to create a national non-profit, Hope Story, which provides hope (and no-cost resources) to families whose children have received a Down syndrome diagnosis.

As I reflect on our story with Noah, I’m thankful for how Hope Story works to address some of the challenges we experienced.

Resources for the Medical Community

At Hope Story, we believe that medical providers have a tremendous influence on a new parent’s life. We invest heavily in providing tools and resources to medical providers to help them care for their patients.

We produce and distribute a “How to Deliver a Down Syndrome Diagnosis & Preferred Language” guide for medical professionals. We also created a national campaign called “The Congratulations Pledge” where we ask medical providers to take the pledge to say “Congratulations.” to a new parent instead of “I’m Sorry.”

Additionally, we host medical professional dinners, inviting medical providers to dinner with families raising children with Down syndrome and learning practical ways from other medical providers how best to serve their patients.

The feedback we receive from these dinners has been extremely positive, but don’t take my word for it. Check out the short video to hear from the doctors who have attended one of these dinners.

Resources for New Families

At Hope Story, we believe one of the best gifts you can give a new family is a relationship with a parent a little further along in their journey. We have a nationwide network of families of children with Down syndrome ready and willing to be a resource to new families. We call these families Hope Advocates!

If a new parent (or medical professional) reaches out to us, we can connect them with an existing parent who can offer encouragement, support, and hope!

Be sure to watch the short video below to learn more about the Hope Advocate process, and if you’re a parent of a child with Down syndrome click here to learn more and sign up to become a Hope Advocate.

As I mentioned, when Noah was born, we received essentially no resources from the hospital where he was born, so we created the resource we wish we had been given. We produce and distribute a 20+ page, full-color booklet in English and Spanish for new parents; “Hope Stories: Encouragement & Answers for Parents of Children with Down Syndrome.”

Thousands of these booklets have been distributed to new parents across the country, and we recently received forty cases of these booklets ready to be put in the hands of new parents! (If you’re a new parent or a medical professional, we’d love to send you a copy/copies for free. Send us an email, and we’ll send you a copy, or several copies.)

We also host the Hope Story Podcast where new parents can be encouraged as they listen to stories from parents a little further along in their journey.

I’m thankful that because of Noah we have been able to do all of the above. His life is truly a Hope Story. As I mentioned, there would be no Hope Story without Noah.


There has indeed never been a better time in the history of the world for someone to be born with Down syndrome. The resources, support, and acceptance of this important group of people are better than ever, and it’s continuing to improve.

But…we still have work to do.

To that end, I consider it a privilege that Hope Story is able to join other local and national organizations working day in and day out to help families of children with Down syndrome. I’ve never been more excited about the future of Hope Story, and I’m thankful for the small part we get to play in a family’s story.

I’m also thankful to be Noah’s dad. I love this not-so-little boy more than I could ever write in a blog post. My life is better because he is in it. In fact, every parent I know who has a child with Down syndrome would say the same thing.

We actually asked four moms what they would say to a new parent of a child with Down syndrome, and as I end this post, I encourage you to take a few minutes to hear what they said by watching the short video below.


Rick Smith

Founder, Hope Story

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.