He will rock you. Zach Pickard is almost 12, weighs 34 pounds and is Queen’s most avid fan.
Zach Pickard is almost 12 years old.
When we first saw him 10 years ago, he was a blue-eyed baby with wisps of blond hair, the rapid aging disease of progeria with which he had been diagnosed seeming far away.
Now Zach is an intellectually sophisticated kid in middle school, and he’s had to develop substantial courage to handle the ravages of the disease on his tiny body.
When we saw him at his 2-year birthday party, devouring two big slices of cheese pizza, he had just broken the 20-pound mark. Almost 10 years later, he’s 34 pounds — still tiny, but with a much different body.
Progeria patients — and there are only a few in the world — have tiny bodies and bald heads with prominent veins. They lack body fat, their tiny fingers seeming almost too frail to take up pen and paper. Zach’s legs are spindly, his knees prominent, his voice tiny, but precise.
While at school, a wheelchair and aide are required to get him to his seven classes a day.
If any of this bothers Zach in the existential sense that middle schoolers start to develop, the sense of their place in the future, he doesn’t let on.
He’s a raconteur, this guy. These days, he likes sushi with his dad Brandon and dreams of Queen concerts and Nintendo Labo robots. He dislikes the middle school class load and all that homework. Middle school dances he likes, because Zach likes being in the center of circles of swaying students.
On the way home after school this afternoon, he considered his evening schedule: “I’m busy. I’ve got an interview and a ton of homework.”
Stonewall Elementary School sent off Zach in a grand way when he graduated fifth grade in May. In addition to receiving the class clown award, Zach was given the Christopher Robin Award for courage to a standing ovation and cheers. Christopher Robin was the A.A. Milne character who went on adventures in the Hundred-Acre Wood with Winnie the Pooh.
Zach is the boy who goes on adventures in South Lexington with his beloved dog Carmen, a Canaan. Canaans are among the rarest dogs in the world, and Zach is among the rarest children in the world, so their partnership has a certain poetic justice.
Asked what it was like this summer when he was the ringbearer at the wedding of former University of Kentucky basketball player Derek Willis when he married Keely Potts and had two beautiful women kissing him, Zach lifts his hands in a “whatcha gonna do” gesture. He’s like a member of the Rat Pack, waving off the adoration.
Zach is very direct with a video camera being pointed in his direction. “Katie!” he says straight into the lens. “Katie! C’mon, Katie! Queen concerts. Any time, anywhere.”
Katie would be former talk show host Katie Couric. Zach appeared on her now-defunct show in July, 2014, and received tickets to see Queen. Whether Couric is still in the ticket-accessing business is unknown, so Zach revises his pitch to add Ellen Degeneres and Jimmy Kimmel.
In Zach’s opinion, which he has held firmly since he was 7, Queen is the best band ever. When the Rami Malek-starring movie “Bohemian Rhapsody” premiered in Lexington, Zach was there: “Big fans gotta be there.”
Sam Berns, possibly the most famous progeria child, died at 17 in 2014, after an HBO documentary, “Life According to Sam,” debuted in 2013. His parents, doctors Leslie Gordon and Scott Berns, helped launch the Progeria Research Foundation. The foundation says there are 154 identified progeria children in the world, but thinks there are more than remain unidentified.
While there have been trial treatments for progeria, no cure has been found.
Tina Pickard looks wistfully at her son as he snuggles with the dog, who looks like a gentle golden giant next to Zach: “I wish somebody loved me as much as he loves that dog,” she said.
“You are a good companion for photos,” Zach murmurs into the fur of the big placid dog. “Who’s a good Carmen? You are, Carmen. You’re a good girl.”