BEN’S STORY

Discovering Ben’s Heart Defect

“Our happy and sweet-spirited son, Ben, was around age three when we realized he had developmental delays. We needed to figure out why it was happening, and then from there, figure out what we needed to do.

Our healthcare providers kept giving me small answers… Ben would get a diagnosis like autism or apraxia or global apraxia, and then six months later he would have developed enough in one aspect that they would take away one of those diagnoses. We got on a waiting list for a genetics clinic, which was going to be a year to year and a half wait! We accepted that’s how it was until we researched other options.

We found the cheek swab laboratory and got our answer! It was like angels coming down from heaven, helping us when we didn’t know what to do! Two days later we were getting him checked for all of the things that come with his syndrome… Ben had a defect in his heart that required surgery.

This whole process has been almost unreal- how fast it’s been, how smooth it’s been. It’s been a Godsend for us. Don’t be afraid to know what’s causing it. You’ll always be able to treat the symptoms, but knowing what is causing it is invaluable, it’s priceless, and it probably saved his life.”

- Robert & Kristine, Ben’s parents

SEE MORE OF BEN’S JOURNEY WITH GENETIC TESTING