DES MOINES, Iowa — More than 5,000 babies are born with Down syndrome every year in the United States.  What began as a support group for about 100 expectant and new moms more than a decade ago has grown into an online community for tens of thousands of parents around the world.  It all started with Iowa mom, Jen Jacob and her son, Owen.

“He is just a little ball of fire for the most part.  I mean he has my sense of humor which good or bad I don’t know, but he really is a joy in our lives.  Just like our other kids,” said the mother of four.

Unlike their other kids, Owen has Down syndrome.

“I just wanted to be pregnant forever honestly because I felt I could still be protecting him.  I was so worried about just how the world would treat him and what his life would look like,” explained Jacob.

She turned to Facebook in search of other moms who shared those same worries.  In just a few days, people from around the world joined her group.  They called themselves the Rockin’ Moms because their kids were rocking an extra 21st chromosome.

“We all felt like this was so therapeutic for us to share our experience, and for other people to know that they were not alone when they were feeling all those things because we all had all the thoughts.  Like maybe thoughts you’re not proud of in those moments,” said Jacob.

That’s how the Down Syndrome Diagnosis Network or DSDN was born.  The mission: to inform, connect, support.  Not only helping parents but helping medical providers.  Jacob wrote the book on guiding them through the Down syndrome diagnosis conversation, including what to say and what not to say.

“It gives me goosebumps. It’s just humbling to go from 150 moms in a Facebook group to now we have 22,000 parents around the world in these small groups talking,” said Jacob.

Maggie Stalzer is one of those parents.

“I’m in a group chat with probably 19 other mothers that are Marlena’s age from California to Maryland, and I talk to them every single day,” said Stalzer.

Her two-and-a-half-year-old daughter has Down syndrome.  Stalzer says it took a while for her to open up about Marlena’s diagnosis, but when she did, the network became her lifeline.

“It was just really hard being pregnant and not knowing what to expect and everybody says, it’s so amazing when you get to the other side, and it really is,” explained Stalzer.

Stalzer says Marlena has brought so much light and a joy to her life and brings a smile to everyone’s face in every room she enters. 

As their children grow, so does DSDN.  Jacob has hosted weekend retreats for hundreds of Moms who chat online to meet in real life.  Dads are now included too. 

“They can just go and be and just be around people who get it.  They don’t have to go and explain their whole lives to everybody because we all have that basic level of understanding that sometimes days are hard and sometimes, they’re wonderful,” said Jacob.

“I don’t know where I would be without DSDN, without Jen.  She’s an incredible person.  She has given all of us this gift of this community and I can’t imagine my life without it,” said Stalzer

A community where strangers become family.

You’ll find more information about the Down Syndrome Diagnosis Network here: https://www.dsdiagnosisnetwork.org/.