Hope and joy: Parents work toward a future cure for their son, live each day of the present to the fullest

jwetzel@tribtown.com

Brandon and Tina Pickard know that the average lifespan of a child with progeria is 13 years old, but they are hoping for the best and enjoying every second they have with their son.

Zach was born with Hutchinson-Gilford progeria syndrome, a disease that afflicts only children, causing them to age six to eight times faster than normal. Because of the advanced aging, children with progeria usually die of heart disease by the age of 13.

Because of his young age, Zach isn't exhibiting many of the distinctive physical symptoms of the disease, yet, such as limited growth, hair loss, a small face, thin skin and a loss of body fat, but his parents know that time will come.

"Developmentally, he is completely normal," Tina said.

The disease is so rare that Zach is just the 13th child in the United States to be diagnosed with it. Only about 100 cases have been formally identified in medical history, and the odds of being diagnosed are roughly one in 8 million, according to the Progeria Research Foundation.

Zach was just 2½ months old when his parents realized something was wrong. They took him to the doctor to be treated for bumps on his legs. They also noticed his skin was stretched tight over his stomach.

At 9 months old, Brandon and Tina took Zach from doctor to doctor looking for answers as to what was wrong with him. Then, they ran across a pediatric dermatologist in Cincinnati who thought Zach exhibited enough of the symptoms to warrant a test for progeria.

"We didn't really know anything about progeria," Tina said. "My husband had seen it on a TV program once, but we were shocked when we found out because it's so rare."

After the initial shock of the diagnosis, the Pickards decided instead of sitting around crying and mourning for the life their son wouldn't live, they would celebrate the life he is living and work to raise money for and awareness of progeria research.

"We want to be as proactive as we can," Tina said. "We are focusing on the positive."

Tina said she is encouraged by recent developments in progeria research. Researchers discovered the cause of progeria in 2002, a mutation in the LMNA gene, which renders the nucleus of a cell unstable, which in turn leads to the process of premature aging, according to the Progeria Foundation.

The first clinical drug trial for progeria began last May.

"For the first time, we have in front of us a possible treatment for progeria," Tina said.

In order to continue the drug trial, the Progeria Foundation must raise $2 million, she added.

"That's why we are working at lightning speed to raise money," she said.

Many friends, family members, co-workers and even complete strangers have joined the Pickards' cause.
"Zach's story is a story of hope," Tina said. "We want him to be accepted and loved for who he is."

The Pickards live in Lexington, Ky., but  Brandon is an employee of Brownstown Electric Supply Co., which has four branches in Kentucky, Illinois, Ohio and southern Indiana, besides its headquarters in Brownstown.

To support the Pickards, the company is sponsoring the first Zach Pickard Pelican 5K Run/Walk at 9 a.m. Saturday in Brownstown. There is a $15 entry fee and the race will begin at Brownstown Electric Supply Co., located at 690 E. Ind. 250.

All proceeds will go toward The Progeria Research Foundation.

"We are so excited that Brownstown Electric took it upon themselves to come up with this idea and run with it," Tina said.

Participants will have a chance to win a treadmill valued at $500 as well as enter a raffle for other prizes. Event T-shirts will be available the day of the race while supplies last.

An awards ceremony will take place after the race with awards going to the first-place male and female runners and first and second place in age categories for both the run and walk.

For more information on progeria, visit the Progeria Research Foundation Web site at www.progeriaresearch.org.

For more information about the Zach Pickard Pelican Run, e-mail Brett Turner at bturner@ brownstown.com or Diana Beedie at dbeedie @brownstown.com, or call 358-4555 or toll-free at (800) 742-8492.