Kennewick family speaking out about a rare disorder - NBC Right Now/KNDO/KNDU Tri-Cities, Yakima, WA |

Kennewick family speaking out about a rare disorder

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KENNEWICK: A Tri-Cities family has suffered a great loss, but now they're trying to save lives by telling their story of a rare genetic disorder.

The Deleon family has lost two sons because of a disease called Urea Cycle Disorder, and now the mother and daughter are battling this disease.

To put the disorder into perspective, we take for granted eating a burger, but if either Robyn or her daughter eat a burger, then that protein can be transformed into deadly amounts of ammonia building up in their brains. It wasn't until later on in life that Robyn found out she had this disease.

"I was diagnosed after I had my fourth child who passed away at three days of age," said mother Robyn Deleon. "That was when it was discovered that I had a Urea Cycle Disorder."

Shortly after losing her first son, Robyn lost another son and not long after that- her daughter was born, who was also disgnosed with the disorder.  Now...Robyn and her daughter both live by a regimented diet only to make sure the worst doesn't happen.

The Deleon's have made it their mission to share their story from state to state. That's why they've created their own on-profit called the "Connecting Families UCD Foundation."

You can find a link to the resources their non-profit offers below.