CEDAR PARK, Texas — A Cedar Park family held the first annual “KATWalk” at Lakeline Park on Saturday.
The walk is designed to raise awareness and money for the KAT6 Foundation, which supports research for the rare condition KAT6. Jeff and Rachel Worden’s 2-year-old daughter, Moira, was born with KAT6.
"Not two hours after she was born, she was being whisked away to Dell Children's Medical Center,” said Jeff Worden, Moira’s dad.
She then spent the next 43 days in the NICU. But it wasn’t until their daughter was 15 months old that the Wordens found out she had KAT6B, a less researched variant of KAT6.
“It’s so underdiagnosed because the symptoms can be so varied, so you don’t know what you’re looking for,” Jeff Worden said said.
Moira has agenesis of the corpus callosum, which is a brain disorder where the two hemispheres of the brain are not working together because the connective tissue is missing. That makes it difficult for Moira to eat, walk and see. Because of these problems, her parents take her to get treatment every week.
“It has been a joy to watch her confidence build,” Jeff Worden said. “There’s nothing quite like seeing your kid so something and go, ‘Oh my God, I just did that!’"
Given that the condition is so rare, there hasn’t been much research on it.
“Oftentimes, what gets the most attention are things that have a large patient pool,” Jeff Worden said. “Oftentimes, smaller conditions and smaller, ultra rare things, like what Moira has, are just difficult to fund.”
That sparked the Wordens involvement with the KAT6 Foundation that raises money and awareness for KAT6.
“It’s a very isolating experience to be a rare child and a rare parent, so I think any time that we can bring a community together like this, who can give us a shoulder to lean on, it is so appreciative and we’re so grateful for it,” Jeff Worden said.
On Saturday, the Wordens were overjoyed with the response from family, friends and community members who wanted to support them.
But their greatest joy in life? Just getting to be Moira’s parents.
“What makes us proud is her waking up and smiling or her showing that she has a joy for lifting her head, or that she’s able to recognize our voices when we walk into the room,” Jeff Worden said. “Those are little moments that they seem, they are small, but they’re also large for us.”