At age 4, Lexington's Zach Pickard fights progeria — and evil-doing Decepticons

ctruman@herald-leader.comOctober 23, 2011 

  • What is progeria?

    Progeria is a rare defect that stops cells from developing properly, causing them to instead age far more rapidly than normal. Children with progeria die of heart disease at an average age of 13. Eighty children living with progeria have been identified from 31 countries.

    The Massachusetts-based Progeria Research foundation has mounted a "Find the Other 150" program to locate other progeria sufferers based on a statistical model of probability.

    How can I help?

    For more information, to donate or to buy progeria-related fund-raising goods:

    www.progeriaresearch.org

    In addition, the Pickards and their family and friends organize several progeria research fund-raisers each year, including a bowl-a-thon, a pancake breakfast, and a run/walk. More information is posted before each event on Zach's Web site, http://www.zach-attack.org/

    What's the next step for Zach?

    The Progeria Research Foundation is planning a third clinical trial involving four drugs, including a drug that will clear out the toxic progerin from cells more quickly. The children will be seen by physicians from Children's Hospital Boston, Dana-Farber Cancer Institute and Brigham and Women's Hospital.

    The trial will be considered a success if the children achieve certain goals, such as rate of weight gain and improvement of blood vessels.

    The test will cost $3.5 million for testing, travel, food, lodging, staff, translation and medical care costs.

    Cheryl Truman


  • Photos from May 2008. Gallery by Charles Bertam.

  • Photos from August 2008. Gallery by Charles Bertram.

Seated at his portable desk, 4-year-old Zach Pickard takes a pencil and carefully writes out a "Z" in perfect block lettering.

He follows with an A, C and H. He scowls at the H and begins to erase some bits where it is not absolutely straight.

"He is a perfectionist," said his mother, Tina Pickard.

It has been nearly two years since we last saw Zach, who has progeria, the rapid-aging disease that is one of the rarest maladies on Earth.

We first met him before that, when he was 15 months old and had tufts of blond hair and an infant's chubby cheeks.

Then, he was a baby.

Now he is a little man.

The last four years, since his diagnosis, have been a whirlwind for the Pickard family. Parents Brandon and Tina went from bringing home a bright-eyed bundle to a nagging fear that something was not right with their baby, who was soon diagnosed with a disease of which his family had barely heard.

The Pickards quickly became national warriors against progeria, networking with other progeria families and the Massachusetts-based Progeria Research Foundation. Zach has become something of a regional celebrity in the progeria community, presiding over packed pancake breakfasts and fund-raising runs to gather money for progeria research.

He also was a participant in a 45-child three-drug trial that required five visits to Boston over two years; his family hopes that he can participate in another trial to be launched in 2012.

Although results for the first trial, in 2007 and the second, in 2009, are still being analyzed, the goal is clear: to turn off the chemical triggers in the cells of progeria children that cause them to age and their hearts to fail much too early. If Zach can benefit from that research, he may thrive long beyond the 13 years the average progeria patient lives.

Zach has met other children who also have progeria. They all look as if they could be siblings — tiny bodies with prominent veins in largely hairless heads.

Leon Botha, a South African artist with progeria, lived to be 26 before dying in June. "I am a spiritual being, the same as you, primarily," Botha said of his disease. "Then I'm a human being and this part of the human being is the body, which has a condition."

Progeria is caused by a mutation in the gene LMNA (called lamin-A), which produces the protein that holds together the nucleus of a cell. Very simply put, progeria is a form of cellular instability that fights the natural impulses of children's bodies to grow and instead ages them.

Progeria kids are born looking just like other babies. Zach was born Jan. 6, 2007, weighing 6 pounds, 14 ounces and measuring 19 inches. He was diagnosed with progeria a few months later.

Zach's parents want their child to live a life as normal as possible within the restrictions that progeria has set for him: the petite body, the need for extra nutrition via the drinkable supplement Pediasure, the caution against childhood's sudden and terrifying bumps and viruses.

It is not that Zach's parents want a different child: They see Zach as flawless already, and simply want him to live a full life.

Soon he will take the next step toward that.

In August 2012, he will attend kindergarten in a regular class at Stonewall Elementary; he has always been in regular classes with children of his own age at daycare, even though he is considerably smaller than other kids, and has always held his own, usually by dint of his effusive personality.

He is delighted to hear that his new school will be full of big kids. His sister Brittany Banahan just started school at Eastern Kentucky University, and he knows that place is full of big kids, too.

"Big kids!" he shouts as he bounces around the family room. "Big kids! Big kids!"

Zach himself is a big kid in the body of a little one: He's still under 3 feet tall and 24 pounds. But he has outgrown his toddler reticence and become social with strangers: He chats up a reporter and photographer about his Halloween costume, which is Optimus Prime, the most heroic of the Transformers autobot crew.

"I am Optimus Prime!" he bellows, lowering his voice to a growl, bounding off in search of his costume.

The last time Zach met a newspaper reporter and photographer, in December 2009, he showed a mean arm for tossing Christmas tree ornaments. Now, in his first real question-and-answer interview, Zach has become more thoughtful about what might sound good when talking to an adult.

He claims that mashed potatoes are his favorite food, and when his parents dispute the idea, confesses, in a whisper, that he is really a pizza kind of guy.

But even there, he is growing up. In the past he has had birthday parties at Chuck E. Cheese's, but when he turns 5 come January, he is moving to where the older, more sophisticated school-age kids go: Gattitown.

"He's just like any other kid who goes to Gattitown," said dad Brandon Pickard. "He doesn't care about the pizza. He wants to play the games."

Zach has always had a high energy level, as if propelled by an internal spring.

Zach, who has superb fine-motor skills, is helping his dad build a series of K'NEX moving carnival toys. He is talking about yellow being his favorite color, but really, he says, he likes all the colors, even red, even pink. He wants his sleeves rolled up to halfway between his wrist and elbow to give him freedom to work. He is fond of SpongeBob SquarePants and has been for years, but has lately also developed a liking for the Little Critter books, featuring the sweetest of dustmop-shaped heroes.

He rushes to unhang his Optimus Prime costume, although as a 4-year-old he truly dislikes rehanging it. "Ooomph," he groans, loud enough so that everyone can hear him, straining his tiny arms to show how onerous it is to tidy things you have just cheerfully scattered on the floor.

He gives high fives, bear hugs and fist bumps. He wears his UK jersey — mom Tina is a big UK fan — but he is really more of a superhero guy.

When we first met Zach, in May 2008, his mother Tina Pickard insisted on one thing: "We want this to be a story of hope."

Zach is amazed to hear a reporter say she knew him when he was a baby. He is so obviously not a baby now.

"Big kid," he murmurs while flipping his K'NEX swings into the air to see if they will fly off onto the ceiling when he flips the battery switch. "I'm a big kid."

Reach Cheryl Truman at (859) 231-3202 or 1-800-950-6397, Ext. 3202 find her on Twitter at@CherylTruman.

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