Downs Syndrome Awareness

The People First Alliance (PFA) is an employee-led LIFE Group at Nutanix that promotes building awareness, acceptance, community, and accessibility for people with diverse abilities. To celebrate the recently founded group, we’re talking with group members to understand why they’re passionate about raising awareness and support for people with a range of abilities⁠—both at Nutanix and within our communities.

Here’s a look at our conversation with Paul Murray from our team in Sweden. Paul is a proud member of our People First Alliance. He joined the Nutanix team in 2016 and works as a Solution Architect creating solutions for multiple groups in the technical organization.

How has Nutanix supported you or shown acceptance for your family in terms of some of the challenges you faced? Nutanix has supported me and my family through the two times that my son Jayden was in the hospital. Jayden was born three weeks early. Little did we know that he had Down Syndrome. I called my manager to let him know that I was going to be offline for a few days, and that was that⁠—or so I thought! Then, we got the news that Jayden had Down Syndrome. The first thing my manager said after hearing the news, was “Take all the time you need.” Another example was last year when Jayden ended up in intensive care and had to stay at the hospital for almost two weeks. My manager told me, “Look after your family and come back when you can.”

I truly appreciated the absolute understanding, without questions, from my managers and teammates, from the People Team, and from Nutanix who offered me the flexibility to work outside my normal schedule.

Can you tell us about the unique perspective that your son Jayden offered you? I didn’t know much about Downs Syndrome before my son Jayden was born. I’ve done a lot of learning over the past three years. I also realized that very few people out there know much about it, and most of what you’re told or led to believe is wrong.

The experts said: “He’ll have difficulties learning.” Wrong. “He won’t be able to go to school like normal kids.” Wrong. What are “normal kids”? There is no normal. We’re all unique. Jayden goes to kindergarten with the “normal” kids and enjoys it, but just like any young kid, he has days when he hates it. “People with Downs Syndrome are always happy.” Wrong. Jayden has days when he’s in a foul mood, just like anyone else.

Have there been any unexpected gifts or things you’ve learned?An unexpected gift from my experience with Jayden has been learning and understanding that we are all very unique. The perspective he has given us is that he simply lives and loves his life. 

What are some of the challenges you’re faced with? One challenge that we’re navigating is that Jayden is late in speaking. We’ve learned that humans communicate through all five senses. Try not talking for a day and you’ll be amazed at how much you can still communicate with people around you. Jayden is just Jayden. He does things when he’s ready and learns on his own terms. Everything has its time. We’ve learned you cannot rush making things happen. Things will happen when time is right.

It’s important to learn patience. Patience helps you see people for who they are⁠—not for what they’re able to do. The challenges don’t lie with my son Jayden, but more with the people around him that have a pre perception of what a person with Down Syndrome should be like. They see the syndrome, not the person behind it. 

People with Down Syndrome are all unique with only one thing in common: an extra chromosome. The challenge is to help the people around my son Jayden, to accept him for who he is, rather than putting him into a box based on his Down Syndrome.

How did you navigate the diagnosis and gain acceptance? When a doctor comes into the room and says, “We need to test for Downs Syndrome”. You’re heartbroken. The world stops. Your heart feels completely still. Nothing makes sense. And then, one heartbeat, and then another. 

You look at each other and start to cry. You ask: How did this happen? Is this real? And you cry some more. But then you start to deal with your new world. You realize, “This is my son⁠—our son. We’re in this together. It’s just another chromosome. Three copies of chromosome 21. That’s all.”

How has your outlook shifted from the diagnosis to how you feel today? Today, three years after learning about Jayden’s Down Syndrome, I realize that Jayden is one of the best things to ever happen to me. We take more time to live and to love, rather than letting life pass by. We were told that he wouldn’t be able to learn or understand much. Looks like someone forgot to tell Jayden that. He learns differently and is truly a unique person⁠—our Little Sunshine.

Thank you to Paul, Bettina, Jayden, and family for sharing their story with us. To learn more about the People First Alliance and our other Nutanix LIFE groups, visit: https://www.nutanix.com/company/diversity