Wednesday, April 16 2014 10:54 PM EDT2014-04-17 02:54:16 GMT
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LEXINGTON, Ky. (WDRB) -- A six-year-old Kentucky boy has a rare and fatal genetic condition, but it does not seem to faze him. This weekend in Louisville, his parents hope to raise thousands of dollars to help find a cure and raise awareness.
Zach Pickard is a wildman. WDRB's Rachel Collier met him on the playground at Stonewall Elementary School in Lexington where he runs around with all of his first grade classmates with endless amounts of energy.
"People enjoy being around him," says his mom, Tina Pickard. "He makes people laugh, he tries to make people laugh. He brings joy to a lot of people."
Zach's fellow first grade classmates are all at least a head taller than him. But his mom, Tina Pickard, says it makes no difference to her six-year-old. "He knows that he has progeria, he knows that it makes him not have any hair. He knows that it makes him short. He knows that it makes him have the veins on his head. But that's about the extent about what he knows about it."
Progeria is a very rare, genetic aging syndrome. Children with the condition usually die from heart attacks or strokes at an average age of only 13. At school, his best bud Joseph looks out for him. He's always close by for a quick hug or a little mischief.
"He's just like all my other students. He gets excited, he loves to listen to stories, he loves to ask questions and participate. First grade teacher Wendy Dick says with Zach, it's always a party at Stonewall Elementary School in Lexington, Kentucky. "Zach's personality is special and I've already told him I feel like he's going to be able to teach me more than I can teach him this year," said Dick.
At the end of a school day at home, he still does not run out of steam. He runs from toy to toy, showing us his golf clubs, Hot Wheels, video game figurines, and his favorite Happy Meal toys.
His family of four remains positive in the face of the fatal condition. "Right now, he is happy and right now he is healthy and we are just taking it one step at a time. You know, something might be different tomorrow, but we just try to live it as it comes."
According to the Progeria Research Foundation, Zach is the only child with progeria in the state of Kentucky. He is just one of 16 in the United States, and only one of 100 children in the whole world with the disease.
"That was what really made it unreal," said Pickard, on her son's diagnosis. "When I think that there's only 100 children in the world it just baffles me."
Diagnosed as a baby, Zach has been on a drug trial for four years to combat the condition. PRF is working to find a cure.
Over the years, Zach's family has raised thousands of dollars for research through pancake breakfasts motorcycle rides, runs, and The Race Against Time -- a walk in Zach's honor -- happening in Louisville's Cherokee Park Saturday.
"I'm not a doctor, I'm not a researcher, we feel like this is all that we can do. And if we can have these events and raise awareness, people will donate money and PRF will continue to have the funds they need to do the research," said Pickard.
Until there is a cure, faith, hope and love, and lots of laughter is what the Pickard family lives on. "I feel special because he's special. I am very proud to be his mother. I cannot imagine having a different child. I would not trade him for anything in this world. I mean I would trade the progeria, obviously, but I wouldn't trade him for anything," said Pickard.
For information on the walk, or how to donate to the PRFclick here.