Roseville fireman finds inspiration in teenager with muscle disorder
Roseville firefighter Jamie Pepin looked for an excuse to leave early the first time he volunteered locally to raise money during Fill the Boot — that is, until he met a girl suffering from a muscular disease.
Ashley Hartigan, then 11 years old, approached Pepin and told him thank you.
“OK, I’ll stay all night and tomorrow,” Pepin recalled thinking.
Since his first experience participating with Roseville Fire Department’s annual Fill the Boot fundraiser, Pepin has found inspiration in Ashley. He’s watched her grow up to now a 16-year-old junior at Casa Roble High School. He has also seen her go from walking to often using a wheelchair.
“That’s what motivates me,” he said.
In early September, 90 volunteers stood in roadways and on street corners to ask vehicle drivers to drop cash into boots. They ended up raising a record $52,109 to benefit the nonprofit Muscular Dystrophy Association, which is dedicated to curing muscle diseases.
The money will help send 300 local children with muscular dystrophy to a week of summer camp in Portola. Proceeds also support the organization’s worldwide research program and its national network of 225 clinics, one of which is based in Roseville.
Ashley got involved with MDA soon after she was diagnosed with a rare muscle disorder in August 2005.
The disorder attacks her central nervous system, pancreas, heart and spinal system, and prevents the stimulation of muscles, so they start to go into atrophy. Her coordination is also affected because her brain doesn’t communicate when her feet are on the floor. But the biggest concern is that the disease can cause an enlarged heart.
A few years ago, Ashley would grow tired walking around too much but her insurance provider would only pay for a power wheelchair. Her parents reached out to MDA who gave her a scooter.
“It’s been a match made in heaven ever since then,” said Ashley’s mom, Vicki Hartigan.
The International Association of Fire Fighters is the single largest contributor to MDA, raising nearly $500 million since 1954. Heather Cianciolo, fundraising coordinator of the Roseville chapter, said these funds have led to several research breakthroughs such as a treatment for Pompe’s disease, which affects nearly 10,000 Americans, primarily babies.
“I believe that the Fill the Boot Drives are so important to MDA because it funds the local research we so desperately need to help find a cure for these diseases,” Cianciolo said.
For September’s event, firefighters from Roseville, Rocklin and Placer County Fire and Sierra College Fire Academy cadets came together to hit the streets.
“It gives me hope and makes me feel like my family is not alone in fighting for a cure,” Ashley said.
But the firefighters sometimes get rude comments and complaints from drivers.
“People sometimes give us grief that we’re causing an inconvenience,” Pepin said. “Well, it’s inconvenient not being able to walk and I don’t really care if we messed up traffic because we did something good for a well-deserving person.”
Additionally, California Senate Bill 582 gives firefighters the legal right to enter the roadway for the purpose of collecting funds for charity.
“It’s important for our family to let people understand how they’re impacting our lives,” Vicki Hartigan said. “When (Ashley) was diagnosed there was nothing on the horizon for her. It’s an extremely rare disease. Now in 2012, there is research being done that could stop and — our hope is reverse — the disease.”
In his 13 years as a firefighter, Pepin has always participated in Fill the Boot. He took over organizing the local fundraiser two years ago, when Roseville firefighters were raising about $20,000 during the campaign.
He immediately contacted Cianciolo to figure out how to be more effective. One way: They split the usual 8-hour volunteer shift into two four-hour days so people would be more likely to stay the whole time.
Ashley’s mom said when her daughter visits the firefighters, they treat her like the Queen of Sheba. The Hartigans consider the firefighters their heroes.
“People look up to us, being firefighters, and that’s great,” Pepin said. “But if you’d ask me who I look up to it’s Ashley. She has way more courage than I have.”