Family

Lexington boy with progeria, now 8, prepares to enter third grade and dance his way through 'Uptown Funk'

When Zach Pickard isn't whizzing around the gym for physical therapy, he likes to eat pizza and butterscotch pudding.
When Zach Pickard isn't whizzing around the gym for physical therapy, he likes to eat pizza and butterscotch pudding. Herald-Leader

Zach Pickard, the Lexington boy diagnosed with progeria as an infant, is now 8 years old and about to start third grade at Stonewall Elementary.

He is tiny, just 29 pounds and 3 feet tall, but he is also mighty.

Although progeria is a cruel disease — limiting growth and causing a raft of health problems, from heart malfunctions to lack of growth — Zach is a whirlwind of chatter, unbreakable good humor and a tendency to jump into a version of the Uptown Funk dance song that would make Bruno Mars himself leap with joy.

Zach will tell you about his favorite school subject (math), his guinea pig KC (on which he dotes, although he still likes cats), the 1950s versions of Godzilla and King Kong (the best, to this 8-year-old's critical mind).

But even though his body is not growing in the same way as those of other children, his mind is starting to explore a tough question, according to his mother, Tina Pickard.

Zach is beginning to wonder why he doesn't look like other children and what that means for his future. In the past year, two children with progeria — one of the rarest diseases on Earth, occurring in only one in four million births — have died. Both were 17.

The Progeria Research Foundation says there are 125 known children worldwide with progeria as of June. Those with progeria have hair loss, prominent veins on their heads and small stature. Later complications might include cardiovascular problems and joint deterioration.

"He's becoming more aware of what progeria is," Tina Pickard said. "That was a big worry for me."

Pickard talked with Zach about the deaths and what caused them. To her surprise, Zach knew a lot more about the disease and its early mortality than she had thought.

Zach is about to enter his fourth year of public school. Although most of the students at his school have been introduced to him and know about his condition, last school year a kindergarten child pointed out Zach's unusual appearance to other children while the two boys' classes were in line.

Zach, ever the sunny responder and showman, pulled back his sleeve to pump up his tiny arm muscle, and called out, "Tell your friends!"

Pickard said that this upcoming school year, Zach again will be introduced to each class of students so the children understand his special medical condition. To those kids who know about Zach already, she said, he remains "a rock star."

Zach is a typical soon-to-be third-grader in so many ways. He's not especially adept at staying still for an interview. He recently got ear tubes, so his hearing has improved. His ability to not spontaneously break into dance is a work in progress.

When he's not whizzing around the gym during his physical therapy appointment — where he's getting help to keep his joints limber and to improve his strength — he likes to eat pizza and butterscotch pudding. Yellow is still his favorite color. His favorite television shows are Teen Titans and Amazing World of Gumball, which is about a cat that gets into hilarious — according to Zach — scrapes.

Earlier this year, the Pickard family went on a Disney vacation sponsored by the Lexington Dream Factory, which helps medically fragile children have special experiences. The family went on a three-night Disney Cruise and spent three nights at Give Kids the World, a nonprofit storybook resort near Central Florida's vacation attractions. Zach got to visit the Magic Kingdom, Sea World and Legoland and have a face-to-face experience with a dolphin.

Zach said it tasted salty.

In August, the Pickards plan to attend the first-ever United States progeria reunion, with 12 families meeting at a Connecticut camp. Before that, on Saturday, the Zach Attack Ride for Progeria will raise money for the Progeria Research Foundation.

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