Zach Pickard has one of the rarest diseases on earth. He is a 15-month-old boy, a child who babbles and runs and is fond of his nap mat at day care. He is surrounded by people who love him like they love nothing else.
Says his mother, Tina: "We want this to be a story of hope."
Zach's life, she thinks, is about the possibility of miracles.
"In the back of your mind, you always feel you should be fighting for something," Tina says, watching her son bobble among the thunder of toddlers at his day care. "And I didn't know what it was. But now I do."
Progeria is an entirely random genetic disease that promises that cruel old age will take hold of a child's body well before kindergarten. About one in 8 million children have progeria, which eventually will lead to baldness, arthritis and heart problems.
For now, Zach is a slip of blond hair and baby jabber, a toddler smaller than others his age who didn't crawl but instead one day simply picked up his tiny body and started to walk. Now, he careens around his south Lexington house like a wind-up toy, spluttering about Ma ma and something that sounds like "tink you" while chomping on French fries. His toy garage bellows: "I am speed."
Zach is, these days, speed itself.
But if you look closely at Zach, you see the aging that is starting to take hold: the prominent veins showing through fair skin, the blond hair thinning in the back, the blue eyes so prominent. And his little body, less than 19 pounds, is aging so fast.
It is happening before their eyes, and it has a name, but sometimes the family looks at Zach and all they see is their baby, indulged and petted, almost like a doll.
"The rarity of it makes it hard to believe," says Zach's dad, Brandon.
Brittany Banahan, 15, Zach's half-sister, says that progeria initially seems like "stuff you hear that happens to other people."
The family's spotless living room has a wall devoted to Zach's toys. Zach's voice lilts over the TV. He totters around the corner just like every other toddler, sometimes with absolute precision, sometimes banging blindly into corners, finding his way.
Progeria appears in children of both sexes and all races. It has been reported from Argentina to Turkey to Vietnam.
Children who have it tend to suffer from progressive heart disease, and they usually die of that. The average lifespan is 13, although the range is 8 to 21. There are only 13 cases in the United States, 46 worldwide.
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. On its most basic level, progeria is cellular instability, the body fighting itself. Children are programmed to grow, to get stronger, to grow hair and teeth and hard bones. Progeria fights that.
It takes its name from geras, the Greek word for old age. Infants are born looking entirely normal. Zach was born Jan. 6, 2007, weighing 6 pounds, 14 ounces and measuring 19 inches -- a big boy, even four weeks early. Although Tina had gestational diabetes, there was no sign that something was different about Zach.
Within a few months, his mother started to notice unexplained bumps on Zach. Nobody could explain them, until a Cincinnati pediatric dermatologist suggested testing for progeria.
Brandon, Zach's dad, had seen a Maury Povich show about progeria.
Last Mod: 05 Mayıs 2008, 18:36
Tina had never heard of the disease.
But their son had it.
Look at the photos of progeria children, with tiny wizened countenances peering out from bald heads covered by hats. Their bodies are fighting their childhood, but they're still children: They bounce on trampolines and sniff dandelions and run after their siblings on tiny, often stiff, legs.
Progeria means suffering. But for the families of progeria children, it also means something else: the chance to see the world through the barriers it puts up for their children, to crusade for research, to bond with each other. Tina Pickard talks about exchanging e-mail with a family in Belgium. Mention a British progeria patient's Web page, and she knows right away: That's Hayley Okines, whose story inspired a recording. Ashley Hegi in Canada made her own heart-tugging video, now posted on YouTube, speaking directly to others with progeria as she prepared to enter ninth grade, telling them that some people understand your appearance once you tell them what progeria is. "And if they don't, it's OK. You're one of a kind."
It's hard to gauge diseases by their relative cruelty, but progeria is relentless: For Zach, the aging process started even before he got his first set of Legos. The pre-emptive attention to arthritis began while he was still in diapers.
The community of families whose kids have progeria is small and spread around the globe, but they are closely knit. Their goal is to make sure that Zach and Hayley and Ashley feel less like one-of-a-kind kids, that they have a community.
In her YouTube video, Ashley talks about working at the animal hospital and watching movies and wishing for the start of hockey season.
The goal for Ashley, and teens like her who have progeria, is not just to start high school, but to finish it.
A progeria drug trial began in 2007 and includes 28 children. The treatment involves blocking the molecule that attaches itself to the progerin protein. If that molecule is blocked, the reasoning goes, then progerin might be paralyzed.
For the families, it's a start, but by no means a certainty. When your child is chronically ill, a drug trial signals the possibility of the most important advance of all: more time. But the trial still has more than a year to go -- and even if the medication is effective, there are other hurdles.
Leslie Gordon, a physician whose family started the Progeria Research Foundation and whose son, Sam, 11, has progeria, says: "You make headway by continuing to work very hard with the families ... to gather as much information as possible about progeria. We just have this philosophy of working hard and going in the right direction of getting to the next treatment." For now, though, there is no treatment outside of the trial.
Gordon is an assistant professor of pediatrics at the Alpert Medical School at Brown University and a guru among progeria researchers. It is possible that she knows more about progeria -- not just the disease, but the children who have it, their individual stories -- than anybody else. In 2002, finding the gene that causes progeria "opened a huge door for us," she says.
Still, finding the mutation does not lessen the suffering of families who have lost children to progeria, or who fear that they will.
Marla Halko of Ohio had three boys before daughter Kaylee, who turns 5 in July, was born. She knew something was different about Kaylee.
Progeria is like a distant bell in pediatric diagnostics: out there, but not the first choice, or the fifth.
When parents find out, there is fear for their children's future, and fear of the burden of looking so different.
But, Halko says, "I didn't give kids enough credit."
"At first the kids may be a little bit afraid of her," she says. "They ask about the veins and stuff. You don't have to go into great detail. They're just curious. ... Once you tell them, they don't even pay attention anymore."
And she tries not to dwell on Kaylee's future: "If I concentrated on when Kaylee was going to get sick, I don't think I would be enjoying her the way I should be."
It is that 13-year average lifespan that bothers Tina Pickard; it's just an average, she points out, not a certainty. Zach is still young. He was diagnosed early, and he has physical therapy twice a week and a dip into a warm pool once a week. The research seems promising. The prospects for a child with progeria are better than they were last year, and way better than a decade ago, before parents got so well organized thanks to Leslie Gordon and her family.
And Zach is young: He doesn't know that he has a disease. For a few more years, he won't know.
So Tina has become something more than Zach's mother: She also is his crusader.
The woman who, one day, might watch her boy go to his first day of high school.
So this is not just a story about a debilitating illness.
It is a story about the grace that comes with accepting each day with your child as a miracle, and knowing that if you can fight for another day, and another, you've got all that you can ask for.