For the Love of Megan
By Teresa Robbins

    Open the door to Pat and Laurie Hutchison's home in Destin and there's a warm, friendly family inside. Their elegant home is cozy but functional for a family of seven. A large wooden dining room table is more than decoration here; it’s a necessity at mealtime. Their daily activities resemble those of other busy homes around town. The afternoon fills the house with the bustle of little ones coming in from school. Two-year-old Mallory and five-year-old Mitchell munch on a snack at the bar while waiting for three other kids to come home; Michael, 13, Matthew, 12, and Megan, 6. Once the whole gang has arrived the house echoes with children’s laughter, teasing, and typical family moments. This family is so vibrant that a visitor would never guess what harsh realities they face when that door is closed.

    Four years ago, their middle child, Megan, was having some strange symptoms. They couldn’t keep weight on her even though she could eat a medium pizza by herself. Her stool was greasy and bulky as well. Laurie’s dad, a radiologist, feared that something was wrong. “He had a bad feeling and wanted us to have her checked out by a pediatrician,” Laurie recalls. She began to take Megan to pediatricians to ease his mind, only to be told that she was fine. Laurie and Pat weren’t anxious because it never occurred to them that something horrible could be wrong. Finally, they visited a pediatrician who noticed something others had overlooked. Megan’s symptoms were similar to patients who had Cystic Fibrosis. The doctor wanted to run some tests on her to be on the safe side but reassured them that it was probably nothing. The Hutchison’s were still oblivious to the detour that lied ahead for their family. When the results came, no one was prepared for the shocking news. “This doctor didn’t call unless it was serious, so when she left a message that she needed to talk with us, I knew something was wrong,” Laurie softly says. From that moment, their lives took a drastic turn. This close family became caught up in a whirlwind of medical terms, breathing equipment and medications. They became well versed on a subject that no parent would want to have to learn about. Unfortunately, because the disease must be fought offensively Pat and Laurie had no choice but to lunge into battle and fight for their little girl.

    Megan Hutchison can win you over in seconds. She’s happy, spirited, and full of energy. She loves to write and sing and plans to take singing lessons. Like most girls her age, she loves Disney princesses. When this brown-haired, blue-eyed dynamo charges into a room she doesn’t light it up…she sets it on fire. Her commanding presence hints that she could easily keep an audience entertained. “Watch, I can do a cartwheel,“ she pronounces as she tumbles into the sideways handspring. She has a daily routine like most children her age but the difference is hers involves details that literally keep her breathing and eating. Cystic Fibrosis, known as “sixty-five roses” by the children who have it, is a genetic disease and is the number one genetic killer in kids. If both parents carry a defective CF gene then there’s a 25 percent chance that their offspring will have CF. Those faulty genes cause the body to produce thick and sticky mucus that stops up the child’s lungs and causes infections that can be fatal. So, Megan must have at least two rigorous breathing treatments a day. This mucus can also block the pancreas keeping digestive enzymes from getting to the intestines which usually aid in the break down and absorption of food. Because of this, Megan begins every meal with pills to help with digestion. “I can swallow my pills by myself now,“ Megan blurts with pride. She’s learning to give herself medication because this will be a lifelong ritual for her. She visits a team of doctors every three months in Pensacola at the Nemours Children Clinic at Sacred Heart as well.

    Learning to speak the CF language and adapt to the new lifestyle was not easy for the family. “It was overwhelming to deal with everything and I wanted to talk to other parents who were going through the same thing,” Laurie says. So, she started making phone calls surrounding herself with moms’ in the same situation. These friendships led Laurie to spearhead a local support group called “Cystic Fibrosis Moms’ Club“. That was just the beginning of her efforts to rally for Meagan. The next plan to combat CF found her. Supportive family members in Birmingham involved the Hutchison family in the national Cystic Fibrosis Great Strides Walk. They found success with their team dubbed “Princess Megan” and eventually decided to start their own walk in Destin. After contacting the Jacksonville office, Laurie got busy and organized the first walk in 2004 which raised $40,000. The second walk raised $52,000. She hopes to raise $55,000 this April.

    Where did that money go? Towards research for treatments and a cure. Previous fundraising has produced amazing results. Fifty years ago a child with CF only lived five years but because the parents of those children raised money they can now live well into their thirties. That is why the Hutchison family is devoted to the cause even though fundraising is not always an easy task. They are constantly immersed in the reality of the effects of Cystic Fibrosis. Stories are swapped about children who have passed away with the disease serving as a personal reminder of Megan‘s condition. “I hear those stories and think, one flu or one pneumonia and that could be us,” Laurie says wiping her tears. She cringes every time she hears these memories because they always begin with “I had a daughter, or son, or niece…” and then they end with a date of death. That’s why she presses on, “It’s not just about Megan, it’s about my friend’s children and others in the future,” she adds. This brave mother wants to rewrite the ending to these stories. Her dream is for someone to walk up to her and say, “I had a daughter who had Cystic Fibrosis, she had terrible problems breathing, and with her digestive system and lungs. She had to take lots of breathing treatments, medications, and was hospitalized often. Then in the year (2006) a cure was found and she no longer has those problems and she is now happy, healthy, and CF free,” Laurie envisions.

    Laurie believes that if everyone pulls together then a cure could be attainable. Her relatives agree and come from all over to participate in her Great Strides fundraisers. There is a group representing Megan in every CF walk on the Gulf Coast as well. Megan’s brothers, Michael and Matthew, have helped sell wrapping paper and Breathe bracelets to raise funds. They will also participate in a fundraiser that their Dad will start next fall. Pat will coordinate the first annual “Destin Charity Bowl” involving young football players from all over the Southeast and plans to raise $30,000. Megan Hutchison is one special little girl but she represents thousands of other unnamed children in the U.S. suffering with the vicious disease. Andrew Carnegie once said, ”Teamwork is the ability to work together toward a common vision. The ability to direct individual accomplishments toward organizational objectives. It is the fuel that allows common people to attain uncommon results.” If your New Year’s resolution was to start exercising then dust off your walking shoes and put them into action for Megan and others like her. There will be three Great Stride Walks on the Emerald Coast this year.

    For more information on Cystic Fibrosis check out their website at www.cff.org or call their office in Jacksonville at (904)733-3560.

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Reprinted with permission from Nancy Babin, Publisher, On the Coast Magazine