Tuesday, March 18, 2008

Baby suffers from rare 'aging' disease


If he's lucky, Zach Pickard will live past the age of 13. Zach, now 13 months old, suffers from Hutchinson-Gilford Progeria Syndrome, a disease that accelerates the aging process when the child is 18-24 months old.
Children with this syndrome die of heart disease at an average age of 13 after aging at a rate six to eight times faster than an average person. Approximately 100 cases have been formally identified in medical history and the odds of being diagnosed with it are roughly one in 8 million.
But, for now, Zach is like any other baby, learning to walk, say words like "mama" and "papa" and making his family laugh with funny faces. With his messy blonde hair, big blue eyes and infectious smile, Zach attracts attention wherever he goes.
"He yaks with strangers when we're in restaurants and he draws people to him," said his mother, Tina Pickard of Lexington. "If you meet him you love him."
Zach was 2 months old when his parents first realized something wasn't right with their boy. They took him to the doctor for unexplained skin bumps.
For nine months, Brandon (Bill) and Tina Pickard went from doctor to doctor looking for an answer. Then, they ran across Dr. Ann Lucky, a pediatric dermatologist in Cincinnati.
Lucky was the first physician to suggest Zach be tested for Progeria. Like most physicians, Lucky had never diagnosed the disease before, but she Zach exhibited enough of the symptoms to warrant a test.
"At first we didn't believe this was possible because of the rarity of the syndrome," Tina Pickard said. "But I knew by the end of the day, after looking at information on the Internet, that this is what he had."
Exactly six weeks later, Zach was diagnosed with Progeria. It took some time, but the family came to accept Zach's diagnosis.
"We realized God had chosen to bless us with this baby. And we are honored. Truly honored," Tina Pickard said.
Right now, Zach is young enough that he isn't showing many physical symptoms. As he grows, however, the recognizable traits of Progeria will begin to show up: limited growth resulting in a short stature, hair loss, a small face, thin skin and a loss of body fat.
Now, the Pickards are trying to raise money and awareness of the rare disease that afflicts Zach.
Because heart disease is the number one killer in America, finding a cure will not only help children like Zach, but it may provide keys for treating millions of adults with heart disease and stroke associated with the natural aging process.
Researchers recently discovered the cause of Progeria in 2002. They believe it is caused by a mutation in the gene called LMNA, which makes the Lamin A protein. The defective Lamin A protein renders the nucleus of a cell unstable and that cellular instability appears to lead to the process of premature aging.
Zach's aunt, Kristin Pickard, organized a recent fundraiser in Frankfort, with the money going to the Progeria Research Foundation. Tina Pickard hopes that through this fundraiser, more people can know and understand the disease.
"Honestly, at the end of the day we have to be able to look at ourselves in the mirror and say that we've made a difference," Tina Pickard said. "We want to educate people and create awareness within the community that this foundation needs money."
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