Arvada community rallies around family with two daughters dealing with rare genetic disorder

kinley and kennedy harrison
Posted at 12:20 PM, Aug 15, 2021

ARVADA, Colo. - If you don't know Kinley and Kennedy Harrison personally, you'd never know the two sisters are living with a rare genetic disorder.

"Kinley is eight years old she is our spunky one. She loves telling jokes and being silly and just messing around being crazy," said Kyle Harrison, the girl's dad. "Kennedy, she's five, she is our princess. She's the one you find dressing up in princess dresses and playing princess all the time."

The tiara-wearing sisters are suffering from GM1 Gangliosidosis.

"They're both very active little girls, very happy. And unfortunately this disease makes it hard for them to do a lot of things, to the point where they're going to have some major hurdles in the not-too-distant future," said Harrison.

The disorder is found in one in every 200,000 newborns, affecting the brain and spinal cord, and is fatal in children.

The sisters were diagnosed in June 2020 after months of dealing with what Kyle and his wife, Kylie, thought were just developmental delays.

On Sunday, the Harrison family decided they'd give back to the rare disease community by organizing a fundraiser alongside OrangeTheory.

"We are gym members here at OrangeTheory Fitness and asked if they were interested in helping out. And they were gracious enough to put on this awesome event and doing a "dri-tri" which is a 2,000-meter row, 300 reps on the weight room floor and then a 5K outside," said Harrison.

The rowing, running and weight lifting happening inside of the gym all benefits the Cure GM1 Foundation.

"It really does make things a little bit easier, getting through the day and being a part of such a great community here in Arvada," Harrison said.

Along with giving the Harrisons an opportunity to raise funds for a foundation helping their daughters, it also gave them more memorable moments with the two.

"We're soaking up every moment we can and making memories and doing fun stuff like this to gather around these girls and other GM1 families," said Harrison.

If you'd like to donate to the "Cure Kinley and Kennedy" fundraiser, click here.