Uncommonwealth: Progeria patient Zach Pickard's big world

ctruman@herald-leader.comOctober 27, 2013 

  • IF YOU GO

    Life According to Sam

    What: Screening of the HBO documentary film about progeria patient Sam Berns, presented by the Progeria Research Foundation Kentucky chapter and South Elkhorn Christian Church.

    When: 6:30 p.m. Nov. 2.

    Where: South Elkhorn Christian Church, 4343 Harrodsburg Road.

    Admission: Free and open to the public, please RSVP by calling (859) 223-1433 or email t.pickard@twc.com.

Zach Pickard is in full Tiger Cub Scout regalia touring the Lexington fire station on Arrowhead Drive with eight of his closest pint-sized colleagues.

His tiny body never stops moving: The arms like fluttering pinwheels, the feet constantly jumping as if the pavement on which he stands is made of rubber. He is chattering. He is playing hide and seek. He is pulling apart the stalks of decorative shrubbery and examining where the green foliage stops and the wood begins.

Zach, 6, is one of fewer than 250 people worldwide with the rapid-aging disease progeria. He was diagnosed while still a baby.

Progeria is caused by a mutation in the gene called LMNA (called lamin-A), which produces the protein that holds together the nucleus of a cell. Infants with progeria are born looking healthy: Zach was born Jan. 6, 2007, weighing 6 pounds, 14 ounces and measuring 19 inches.

But within a few months, his mother started to notice unexplained bumps on Zach. Finally, a Cincinnati pediatric dermatologist suggested testing for progeria.

Because of his disease, Zach is much smaller than his fellow Scouts. His voice is also small, but he has learned to manipulate it so that it projects into occasional growls and roars. Zach's head is bald, its veins prominent. His limbs are thin; his sensitive eyes often covered by sunglasses. All of this is due to progeria.

In September 2012, the Progeria Research Foundation announced that the first-ever clinical drug trial for children with progeria — using a drug called Lonafarnib, originally developed for cancer patients — had proven effective for the disease. Every child treated with the drug showed improvement in one or more of four ways: gaining weight, better hearing, improved bone structure and increased flexibility of blood vessels. Twenty-eight children from 16 countries participated in the 21/2 year drug trial.

Zach is part of the second drug trial, which is still under way.

"We go back to Boston in March," said Zach's mother, Tina Pickard. "At that time, the trial will be extended, or we'll figure out what the next trial is. We don't know."

The Progeria Research Foundation says that the total number of known living children with progeria is 100 worldwide — spanning five continents, with ages from eight months to 20 years.

The Herald-Leader has published occasional pieces on Zach since he was a baby. Even then, he buzzed with energy and good humor. He is rarely in a bad mood, and all parts of his life seem to be an exploration of joy.

Zach has a way of making his presence known wherever he goes. Last year, in kindergarten at Stonewall Elementary, he was a hallway superstar. This year, his mom says, the family is concentrating on giving Zach a more studious, disciplined air.

"He never stops," Tina Pickard said. "In his mind he's got some elaborate scheme. ... He's curious and he's loud, and he asks the most questions."

He likes math and physical education class, books about cats and the possibility of getting his first pet, a guinea pig. His best friend is Joseph Turner, who is also in the Southland Christian Church-based Cub Scout pack; the two play like tangling kittens.

During the evening fire station tour, Captain Rob Larkin observes that it's getting dark.

Not just dark, Zach assures him. "It's very dark," he says.

Larkin explains to the Scouts that living at the fire station while on duty "is kind of like living in a big house."

He presents the equipment and special clothing that firefighters have to be able to put on within 30 seconds. Zach is eager to lead the count. He is wide-eyed as a firefighter ascends a 105-foot ladder on a fire truck, and then when lowered, does a head-over-heels flip off the ladder.

"That was awesome!" he exclaims.

Zach can recite the Cub Scout oath and the pledge of allegiance, although he gives it a Zach flourish, finishing off the pledge, "with liberty and justice for me."

Progeria has hit the national consciousness with the new HBO documentary Life According to Sam, about the 17-year-old Sam Berns, whose aunt Audrey Gordon is head of the national progeria research foundation. Berns is a high school junior who says in the film: "I didn't put myself in front of you to have you feel bad for me. ... This is my life, and progeria is part of it. It's not a major part of it, but it is part of it."

Zach is still too young to look at his disease philosophically.

But he knows that he's smaller, his mother said. He knows he has something called progeria, that it makes him short and that because of it, he has no hair.

Other details about the disease will be revealed as Zach grows old enough to ask about them, Tina Pickard said.

"We're just going to play that by ear," she said.


If you go

Life According to Sam

What: Screening of the HBO documentary film about progeria patient Sam Berns, presented by the Progeria Research Foundation Kentucky chapter and South Elkhorn Christian Church.

When: 6:30 p.m. Nov. 2.

Where: South Elkhorn Christian Church, 4343 Harrodsburg Road.

Admission: Free and open to the public, please RSVP by calling (859) 223-1433 or email t.pickard@twc.com.

Cheryl Truman: (859)231-3202. Twitter: @CherylTruman.

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