LOUISVILLE, KY (WAVE) - It's been called the Benjamin Button disease. In the movie, the main character is born as a 70-year-old man. In real life, it's a race to save the lives of rapidly aging children. A major effort for those children is underway here in Louisville. A local group of doctors and nurses are trying to fund research for Progeria. For one of those nurses, it's a very personal fight.
The grandson of Kim Pickard, a Louisville nurse, is the only child in Kentucky with Progeria. The condition is so rare, there's little research and that's why time and funding are so precious.
Zach Pickard's voice is so sweet, you smile when you hear it. While Zach may not look like other 9-year-olds, he is 9, that's why he loves talking about his guinea pig, Casey. Zach smiled when describing his pal, "He's fat and super fluffy and super cute!"
We've been lucky enough to follow Zach since he was a toddler. He is the only Kentucky child with the rare rapid aging disease Progeria. The accelerating mutant gene causes hair loss and wrinkles. The 20 children in the U.S that have it physically age seven to ten years every birthday, that puts Zach somewhere between the ages of 63 and 90 now.
"They have arthritis like older people and they have heart problems," explained Pickard.
The aches and pains won't stop Zach. He just got back from Myrtle Beach to be with other children who have Progeria and he recently led art and motorcycle fundraisers in his home of Lexington.
Zach's fight has gained plenty of VIP support from Katie Couric to Coach John Calipari, the University of Kentucky Basketball
players and UK cheerleaders.
"They saw a video and saw that I lived in Kentucky and contacted me," Zach said of UK player Derek Willis and his friends.
But Zach's biggest fan is his Louisville Nana.
"You know come on, we've got to make this work," said Pickard, "we've got to get the funding and we've got to get the drug and we've got to get a cure!"
Pickard has organized a team of colleagues and friends at Dr. Marc Salzman's office, where she works. They are dedicated to an annual walk for education and fundraising that could boost a Boston drug trial Zach and other children have been a part of.
"The prayer every day is please save my grandson and the children," Pickard said, "that's my goal, he's the love of my life."
The average life expectancy for Progeria is 13 years, but it's believed the drugs being tested could add several years to a child's life.
Zach will be in Louisville on Saturday, August 27, for the 6th annual Race Against Time 5K at Norton Commons and he would love for hundreds of people to join him. The 5K starts at the Oval Park Amphitheater with registration beginning at 8 a.m. and 5K taking off at 9 a.m.
There will be food, music, a silent auction, plenty of activities for the kids.