ST. LOUIS COUNTY, Mo. - First responders from across the St. Louis metro are raising money and awareness after a local firefighter's son was diagnosed with a rare genetic disease. They wanted to branch out from the traditional trivia nights, poker tournaments and 5k runs, but also stick to their fire rescue roots.
Firefighters often work long shifts and live at the firehouse while they are on duty.
"A third of my life was at the firehouse and I wouldn't have traded a day of it," said Capt. Dan Stoverink, Monarch Fire Protection District.
When you spend that kind of time with people, they start to feel like family. When Monarch firefighter Adam Coughlin's son, Camryn, became ill, the whole "family" felt it.
Camryn's symptoms began with vision problems. After numerous tests and an MRI, Camryn was diagnosed with adrenoleukodystrophy (ALD), a rare, incurable genetic disease that attacks the neurons in the brain. ALD affects one in 18,000 people, mostly young boys. At seven years old, Camryn's disease has progressed quickly over the past few months.
"He's having trouble walking, he's losing control of motor function, fine motor skills, his hearing, his vision, those kinds of things, and it's only going to progress worse and worse until he gets a bone marrow transplant," said Sam Jenne, a firefighter and paramedic with the Monarch Fire Protection District and Adam's friend.
Jenne, speaking on behalf of the Coughlin family, said if left untreated, ALD can lead to coma or death.
The Monarch Fire Protection District and the Waterloo Fire Department, where Adam is a volunteer firefighter, each held events to register new potential bone marrow donors to the national registry. Stoverink said some of the firefighters' kids wanted to help as well so they sold hot chocolate at the event.
Fortunately for the Coughlin family, Adam was a match for Camryn. Before the recent transplant, Camryn had to undergo high dose chemotherapy to better the odds his body will accept the new bone marrow. It may be six months before the transplant fully takes effect, but if the procedure is successful, it will stop the disease from getting worse.
Camryn will be in the hospital until at least mid-March. In the meantime, the firefighter family is working hard to raise money to support the Coughlins' medical expenses.
The Monarch Fire Protection District has teamed up with Responder Rescue to host an axe-throwing tournament on Tuesday, March 13. Responder Rescue is a local organization founded in 2009 by a firefighter who saw an opportunity to help fellow first responders in the St. Louis metro who may be going through a rough patch. The organization provides one-time financial assistance to approved applicants.
"After all resources have been exhausted, we help pay mortgage payments, utility bills," said Lynn McQuesten with Responder Rescue. "We help the living. We help those that survive injuries and illnesses, on and off the job."
The tournament will be held at The Axe House in Valley Park, located 20 Meramec Valley Plaza Drive.
"Being a firefighter family, we're a community," said owner Lorie Lofquist whose husband is a firefighter with the City of Kirkwood. "We're close to each other just like we're close to our blood relatives, and sometimes even closer because we have to rely on them when things get tough."
Supporters 21 and over are invited to watch the tournament. Monetary donations will be accepted at the door. There will be food, drinks, raffles and other games for all attendees to participate in.
The Axe Games - Benefit for Camryn
Tuesday, March 13
The Axe House
20 Meramec Valley Plaza Dr.
Valley Park, MO 63088