January 24, 2009 – Herald Leader

Cheryl Truman and Charles Bertram with the Lexington Herald Leader are at it again….catching Zach in action, this time at his 2nd birthday party at Chuck-E-Cheese.  Zach had a great time playing all the games and riding the rides.  He also enjoyed the pizza and dancing to the music!  We especially like this story because it shares with everyone just how much hope we have that Zach is going to be getting a treatment very soon.  Zach’s nana, Kim, also had a great time sharing the night with Zach.  He sure loves his Nana!  Thanks Cheryl and Charles for a great job on the article!

Zach Pickard of Lexington, one of the few children in the world with the rapid-aging disease progeria, turned 2 on Jan. 6.  He celebrated with a party at Chuck E. Cheese, devoured two pieces of pizza and played a mean game of whack-a-mole.

It’s tough to describe Zach. It always has been, since we met him last April.     Progeria babies enter the world like everyone else, with tufts of fine hair and chubby cheeks. But within months, progeria infants start to lose the baby glow: Their hair disappears. They remain tiny, their veins prominent, their legs stiff, their eyes protruding.  Zach at 2 years old is tiny, exquisitely formed, in awe of everything around him, perfect in his own way.

Says his grandmother, Kim Pickard: “You should hear him talk and laugh and run.”

His feet are children’s size 4, lean and skinny. His fingers are so tiny, they can pry into the token slots of the games at Chuck E. Cheese.   Zach is whip-smart. He picks up how to run the Chuck E. Cheese system within moments: Run, token in slot, smash the critter. Run, token in slot, ride the truck.

When we last saw him, back in the summer, he was struggling to do the things that other toddlers take for granted  walking, climbing, even crossing a slight incline on a sidewalk. The world looked daunting.

But Zach has made huge gains in mobility: His nonstop energy has landed him at the windup-toy stage of toddlerhood. Set him down, and away he goes.  He loves using the family’s coin-counter with dad Brandon, loads his own CD player, dances to the fast songs and is fascinated by heavy equipment and trucks. Although Zach just broke the 20-pound mark, he does the things any 2-year-old would at a Chuck E. Cheese birthday party, including casting a quizzical smile at the pizza chain’s giant animatronic rodent.

But two years looms large in the progeria datebook. The average age at which a child is diagnosed with progeria is 2.9 years. Zach was diagnosed at 11 months.

While progeria was once considered an automatic death sentence, the buzz in the world progeria community is about a potentially game-changing drug that might halt or even reverse the blood-vessel damage the disease causes  a development that could alter the lives of not only kids with progeria, but also adults with cardiovascular disease.

A progeria drug trial began in 2007 and includes 28 children worldwide.

Tina and Brandon Pickard think the trial will succeed. They are convinced that their boy will get the medication and escape progeria’s most damaging and fatal effects.

A worldwide family

This is a critical year for Zach.  After two years, children with progeria gain an average of only a pound a year. Children without progeria gain an average of four pounds between their second and third birthdays.

It’s not that children with progeria are older. But their bodies react as if they are: Skin will be stippled, joints tight.  Despite the encouraging news on progeria research, the disease is still a killer. Two children with progeria died last year, 14-year-old Sarah from Austria and 15-year-old Mégane from France. The disease is still considered uniformly fatal.

Progeria kids are more than a loose-knit worldwide family: They actually look alike. Says a recent study, “Children with HGPS (Hutchinson-Guilford progeria syndrome) look so similar that they could all be mistaken for siblings.”

Progeria is rare, and for the families, hope is still the emotion fueled by cash. Many families are diligent fund-raisers, appealing for money through Web sites and community events.

Says Zach’s mother Tina: “These children still have progeria regardless of the economy. There’s still a need to help find the cure.”

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