LOUISVILLE, KY (WAVE) - A Kentucky boy is among a small group of children in the world taking part in a clinical drug trial in March to fight the rare, rapid aging disease Progeria.
His family members, who live both in Louisville and Lexington, have been to working to raise money and awareness to get him there.
Kim Pickard routinely checks in on her grandson Zach Pickard in Lexington. Zach is the only child in Kentucky who has Progeria.
"How was your school today?" Kim Pickard asked him.
"Good," he said.
Their Skype conversation is a little blurry on the connection, but the picture is true and clear. At age 8, Zach has wrinkles, thin skin and no hair. The rapid aging disease Progeria puts his health age anywhere between 56 and 80 years old. As a boy he's dealing with issues like arthritis, and is at high risk for heart disease and stroke.
"He already takes a medicine for blood pressure," Kim Pickard said.
On the inside, Zach is still a kid and is concerned only about kid things, like his guinea pig Casey who he held up for the cameras.
Zach's parents thought at first he was a healthy baby but soon would find out he had the rare disease caused by a mutant protein that comes with an average life span of 13 years. Kim Pickard said the news was devastating.
"I worked in emergency for a lot of years as a nurse and I couldn't do a thing for my own grandson," she said, "I could save lives somewhere else and I can't do a thing for him."
But Kim Pickard and her colleagues at Dr. Marc Salzman's office in Louisville realized there was something they could do. And for the last five years, they have been in a Race Against Time. They have raised awareness and thousands of dollars for a 5K of the same name. The money goes directly to research. Dr. Salzman's Office Manager Tara Underwood is a family friend who also has a 9-year-old son who is friends with Zach.
"The money that we raise helps these kids stay in this trial," she said, "and if they're not in the trial, they may not get the drugs and live as long as we hope they do."
The work is slowly paying off. Zach's fight has moved from Kentucky to the national stage. Last year, Katie Couric was so taken by Zach she got his family tickets to see Queen. "We are the Champions" is Zach's favorite song. He sang to us via Skype, "And we'll keep on fighting to the end!"
Zach promises if you come to his 5K, he will keep fighting, singing and even show off some new dance moves he has been working on. The 5K Race Against Time, is Saturday, Sept. 12 in Cherokee Park.
Registration is at 8 a.m. with the walk at 9 a.m. The family and organizers have many silent auction items to bid on. That money goes to the Progeria Research Foundation helping Zach and other children in the upcoming clinical trial in March.
Find out more about The Race Against Time Facebook page and on Zach's website.