Family pushes for awareness, funding on ‘Rare Disease Day’

0
0

WHEAT RIDGE, Colo. — The Harrison family cherishes every day they have with each other. It’s because they don’t know how many days they’ll have all together.

Kyle and Kylie Harrison’s oldest two daughters, Kinley and Kennedy, both have an extremely rare genetic disorder that is fatal in children.

“It’s every parent’s worst nightmare,” the family told Denver7 back in July, only a month after the girls were diagnosed.

The family fought for funding into the rare condition called GM-1, raising thousands of dollars themselves. They spent the last four months at the National Institute of Health in Maryland, where the girls are part of a first-of-it’s-kind clinical trial.

“With the gene therapy the hope is that slows down the progression, or best case it freezes it,” Kylie said.

The girls have a disorder found in one in every two hundred thousand newborns. Yet, this family knows they’re not alone.

“There’s over 300 million people in the world who are effected by a rare disease,” dad Kyle said. “So collectively it’s a big group. And I believe only 5% of those rare diseases have an approved treatment or an approved cure.”

On Sunday Feb. 28, the Harrisons will continue their push for awareness and funding as a part of ‘Rare Disease Day.’

“It’s so important for us to continue to advocate for research and development for treatments,” Kylie said.

“If we can raise enough awareness about these diseases perhaps we can be in in position to pool resources and make an impact on these kids lives,” her husband echoed.

According to RareDiseaseDay.org, the campaign is aimed at the general public, but also “seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.”

The Harrisons described a saying that goes along with Rare Disease Day, that new doctors are sometimes told “If you hear hooves, think a horse, not a zebra,” in reference to the idea that the most common diagnosis is likely the correct one. However, there are ‘zebras’ in the world, those with rare diseases. That’s why supporters are asked to wear stripes on Rare Disease Day.