Fort Washington woman to hike for money, awareness about progeria

A Fort Washington woman is embarking on a 27-day hike to raise money and awareness about progeria, an extremely rare genetic mutation that causes premature aging and death.

Amy Ruhf began planning the trip soon after meeting Phyllis Falcone, a fellow member of First Presbyterian Church of Ambler and the mother of two young boys with progeria.

Nathan, 8, and Bennett, 5, are part of a clinical trial of a drug that may help slow the disease's progression. Their father said the treatment appears to be helping, but it is still taking a toll on their young bodies.

They are fragile and small for their ages. But they still like to run and play and laugh like typical boys.

"Nathan and Bennett are awesome kids, full of energy and full of joy," Ruhf said. "Nathan is a little quiet and a little shy, but he's extremely bright. . . . Bennett is more rambunctious and a daredevil."

As of May, only 114 children worldwide were known to have progeria, according to the Progeria Research Foundation. Nathan and Bennett were numbers six and seven to be diagnosed with Mandibuloacral Dysplasia Type B, a variation even more rare than the typical progeria, their parents said.

"It's very hard having two children with progeria, but it's wonderful that they have each other," said Phyllis Falcone. "They're definitely best friends."

Children with progeria typically die of heart attacks or strokes, and have an average life expectancy of 13 years.

"We don't know what the life span is" for their mutation, Phyllis Falcone said. "We're assuming it's longer, but we just don't know."

Ruhf, an athletic trainer for the Lower Moreland Township School District, hopes to raise $25,000 for the Progeria Research Foundation.

She begins her journey on the Appalachian Trail on June 20, at the Delaware Water Gap, and will keep going for 250 miles, ending up about 15 miles west of Gettysburg.

Along the way, she will blog and tweet about her trip. Members of the church will take turns bringing her more food and supplies, and sometimes keeping her company on the trail.

Phyllis Falcone said she's nervous for Ruhf, who at five feet tall is nearly eclipsed by her 40-pound hiking pack, to be out in the wilderness for so long. "But she has bear spray," Falcone joked.

Ruhf's blog is at www.hike4hope1.blogspot.com. The Falcones also have a site, www.nathanandbennett.com, for their fund-raisers and events.

Over the last few years, Mark Falcone said, they have raised an estimated $75,000 for progeria research. The family, including 11-year-old sister Libby, lives in Erdenheim.

"They're phenomenal kids who deserve a chance to grow up and pursue their dreams," Ruhf said, noting that Nathan wants to be a paleontologist and Bennett a race car driver. "If by hiking 250 miles I can help to give them that chance, then that's what I'm going to do."