Benefit will make
a Difference for Coleen

By Jon Campisi
Times Staff Writer

Most will agree that a sense of humor is key to any relationship.
The relationship between Coleen Murphy and Jeanie McLaughlin is no different, even though theirs is strictly a friendship.
What’s most amazing about the banter between the lifelong friends and Northeast Philadelphia natives is that much of it has taken place inside of a hospital room, and deals with subject matter few others would dare not joke about.
But for Murphy, having a smile on her face, even through tough times — especially through tough times — is the only way to live.
"She’s the type who totally doesn’t feel sorry for herself at all," McLaughlin said of her best friend, who suffers from not one, but two debilitating diseases.
Murphy, 46, is afflicted with tuberous sclerosis complex, which causes non-cancerous tumors to grow on organs throughout the body, including the largest one — the skin.
The second disease, an extremely rare one that only affects women, is called lymphangioleiomyomatosis, or LAM, a chronic ailment that permanently damages the lungs.
One may think Murphy might be angry, or bitter at having been dealt these cards in life — there is no known cure for either disease — but she’s not. In fact, she’s happy because she has now found her purpose, that is, to raise money and awareness about LAM and tuberous sclerosis.
On Saturday, her organization, the Coleen Murphy "Making a Difference" Foundation, will hold its second annual Beef & Beer Benefit at St. Dominic’s Marian Hall, 8512 Frankford Ave.
Last year, McLaughlin said around 130 people attended the benefit.
"It was successful," she said, declining to reveal how much in proceeds were taken in. She did say a "significant amount of money" was made, and the foundation cut two checks, one to the LAM Foundation, and the other to the University of Pennsylvania Lung Transplant Center. The same will be done with this year’s proceeds.
For Murphy, educating the public on these two serious diseases has become her life’s mission. The Pennypack resident first started showing symptoms of tuberous sclerosis around age 6. At the time, doctors had no idea what they were dealing with when they noticed changes in her skin.
At first, she was told she might have adenoma sebaceum, which causes lesions or lumps on the face. Murphy then spent time visiting dermatologist after dermatologist, but she still didn’t receive a solid answer on what was happening to her.
"They (doctors) just thought it was a skin disorder, but they didn’t have a clue that it was affecting other parts of her body," McLaughlin said. "Basically, they had not a clue what they were dealing with."
And so it went. Murphy grew older, she finished school, she tried her hand at hairdressing, she entered the military.
Then came that fateful day when she finally got what she was seeking — closure.
While in boot camp, cadets were tested for skin disorders. It was then that Murphy learned she had tuberous sclerosis. Her brief stint in the military came to an end, something she was not necessarily upset about.
"Now, I prayed every night to get out of boot camp because I couldn’t hold a rifle, I couldn’t tie my shoes," Murphy said, before adding with a smile, "Be careful what you pray for because you just might get it."
But the story doesn’t end there. For personal reasons, Murphy decided to keep her diagnosis to herself.
"I got out of the military and I never said anything about this tuberous sclerosis," she said. "I said, ‘I don’t care, God answered my prayers.’"
Then one day, Murphy suffered a double lung collapse, which signaled the onset of her second disease, LAM. Today, Murphy’s lungs are plastered to her chest wall, and she needs to cart oxygen around with her wherever she goes.
Part of the desire to raise awareness about the two afflictions, at least in McLaughlin’s mind, stems from the reaction Murphy receives from people who automatically assume her condition was brought on by poor habits, such as smoking. Murphy never smoked a day in her life.
She’s also very much a fighter, McLaughlin said, something proved by the fact that her friend lived all of those years not knowing she had tuberous sclerosis.
"They (doctors) couldn’t believe that she did live all those years normally," McLaughlin said. "That’s when we knew she was special."
And special she is. So special, in fact, that her best friend decided to start a foundation in her name.
"Jeanie thought of it," Murphy said. "She came in and said, ‘We want to start a foundation for you,’ and I just cried. I did, I thought, ‘Oh that’s so thoughtful.’"
The name itself, however, was all Murphy. The story goes that while on the operating table in 1997, Murphy was declared clinically dead for a brief period of time. It was then that Murphy recalled catching a glimpse of that elusive other side.
"I believe I talked to God," she said. "I remember talking to him and saying, ‘I’m not through yet, because I can make a difference,’ and that’s the name of our foundation."
Meanwhile, doctors were considering taking Murphy off of life support, warning McLaughlin that if Murphy were to pull through, she would most likely live out her remaining days in a vegetative state. Obviously, this didn’t sit well with McLaughlin, who laughed off the doctors’ assertions.
"I kept saying, ‘Oh she’ll go in a skiing accident,’’ McLaughlin said jokingly. "I said, ‘This is not the way she’s going down.’
"She beat the odds," McLaughlin continued. "Even though she was hooked up to everything under the sun, I just had a feeling that this is not the way she’ll go. Everybody else thought I wasn’t seeing what was in front of me."
Clearly, Murphy did pull through, although her fight will never be over. Still, she doesn’t complain, and always looks on the bright side, McLaughlin said.
"She has amazing spirit through all this," she said.
Murphy has attended various support groups over the years, which has helped and hurt. Addressing the latter, she said it’s difficult to witness the young children affected by tuberous sclerosis, seeing them have to be put on anti-seizure medicine and other drugs to control their condition. Parents, however, look to Murphy as somewhat of an inspiration, she said, since she managed to finish high school and lead a relatively normal life despite her challenges.
Murphy said while there is no known cause of tuberous sclerosis, doctors believe the disease might be genetic. People afflicted with the disease have to undergo regular monitoring to ensure the growing tumors don’t overtake the body’s organs.
One good thing to come out of the whole situation, McLaughlin said, is her friend’s newfound knowledge of medicine. She joked that Murphy has become a self-proclaimed doctor as of late, something that could be attributed to her time spent in and out of hospitals and doctors offices.
"She has all this medical knowledge," McLaughlin said. "Even along the way, Coleen is still trying to help other people and think nothing of her own needs."
As for her own medical professionals, McLaughlin said her friend has a strict requirement when it comes to those who may treat her.
"All the doctors along the way had to have a sense of humor," she said. "If they come into the room and they’re serious, she’s not happy."
As for Saturday’s benefit, Murphy had one clear goal in mind.
"Basically, I just want to raise awareness of people who are coming up in the ranks, that they don’t go through what I went through, (that) they can make their lives a little easier," Murphy said, before adding, "Keep smiling." ••
The beef & beer benefit will take place Saturday from 7 to 11 p.m. A donation of $25 includes draft beer, food and live music by the Igg Tones. Chinese auctions and 50/50 drawings will also be held. For more information, visit www.cmfoundation.net
Reporter Jon Campisi can be reached at 215-354-3038 or jcampisi@phillynews.com