Not All Gladiators Win the Battle.
Each day, everyone is faced with challenges. Everyone makes choices hoping they are the right ones. We build our minds and bodies to face adversity, but even then, it’s not enough and there is loss.
Losing someone is one of the greatest challenges in life. Losing a child-there are few words.
In 2007, two families received the most unimaginable news. Their baby girls had Rhabdomyosarcoma-a rare form of childhood cancer. Emily Barger was six-years-old and Madeline (Maddie) Harrill was four at the time of their respective diagnoses. Both girls underwent chemotherapy and radiation treatments. Both girls fought valiantly. Both girls lost their battle a year later, first Emily, then Maddie a few weeks later.
Almost immediately, both sets of parents knew more had to be done and so The Butterfly Fund was established in August 2008. The initial goal was to raise money to support cancer research as well as assist East Tennessee Children’s Hospital, where the girls had spent most of their time receiving treatment.
“This year we’re going to create one scholarship for a medical student, either in nursing or a doctor,” said co-founder and Maddie’s father, James Harrill. “Research is so expensive: In order to make a meaningful difference, $25,000 is a lot of money to some, but just a drop in the bucket. We’re looking at supporting those behind the research.”
The Butterfly Fund directs their contributions to support pediatric cancer services and treatments as well as the National Childhood Cancer Foundation. One way is through the Palette of Care program, for chronic or terminal patients. The Butterfly Fund received donations through various community events and donated the money to Children’s Hospital. “One of the first things we did was help renovate two hospital rooms to make it a more home setting for children and their families that are going to be hospitalized for long periods of time,” said Harrill.
After six years, The Butterfly Fund has grown into a nationally recognized organization, something Harrill and his high school friend, co-founder and Emily’s father, Brian Barger, never imagined. “For me it was a way to stay sane and not relive the whole year and a half over and over again. To have a positive come out of a negative,” said Barger. “For me, being able to give back to somebody, to have a cause, is the best therapy I could have.”
Time was not on Emily or Maddie’s side. Once the girls were diagnosed, their treatments started almost immediately. Instead of princesses, fairy tales, and birthday parties, they faced tubes, radiation, doctors, and chemotherapy. Emily struggled with eating-she refused meals, as six-year-olds often do, but in her case, she needed every calorie should could get. How does one fight to survive when they haven’t even experienced life?
Sometimes the most powerful influences come in the smallest of packages. A longtime friend and colleague of the Bargers, Michele Silva, made a drastic lifestyle change. A pack a day smoker, she quit a month before Emily passed away. “I wanted to quit and thought I didn’t have the strength to quit. I was making bets with the man upstairs that if he would heal this girl, I’d quit,” said Silva. “He didn’t save her, but she saved me. She’s my angel up there, looking out for me.”
Emily and Maddie’s legacy has reached countless others, including strangers. A man from middle Tennessee passed away and in lieu of flowers he wanted donations made to the Butterfly Fund. “I’ve never met the gentlemen, I couldn’t find any records that he had donated before so things like that happen and it’s uplifting and eye opening,” said Harrill.
Perseverance is a trademark of a true gladiator. One must rise to the occasion and continue the fight, even when others fall short. There was no hesitation for Barger and Harrill when asked who the gladiators were in their family: their wives. The husbands went to work each day, leaving their spouses to care for their sick child. Misty Barger and Christina Harrill experienced every mother’s worst fear and remained strong everyday. Misty and Christina were the constants in an unpredictable situation. “She [Misty] was there. She did all the dressing changes, all the shots. She was there for all the chemo. I went to work and she stayed home. She did baths, feeding tubes, dealt with the crying and Emily not wanting to eat,” said Barger. In addition to caring for Emily, it was Misty’s job to manage the house as well as keep up with the Barger’s other two daughters while Brian worked overnights as a television news producer.
“Bathtime was my job,” said Harrill. “But when she [Maddie] started radiation treatments, they started marking her body for where the radiation beams would be focused and it looked like target practice and I was like, ‘Honey, I can’t do bath time anymore. I can’t deal with this.’ I got to have some normalcy, but my wife, she lived with it every second of every day. No doubt, she’s the strong one in our family.”
Time rolls on, and both families continue to move forward. The Bargers have watched their other two daughters grow into beautiful, boy-crazy teenagers. The Harrills had a second child four years ago.
There are still moments of sadness in the absence of Emily and Maddie. Seeing friends of the girls grow up and wondering what would their children have looked like, what would they be doing are questions that linger for these parents. The girls’ time here was short, but incredibly meaningful. Like many children, it’s a little easier to see a bright side: life hasn’t completely jaded them. These little gladiators may have lost the ultimate battle, but their faith and strength remained to the end. After Emily’s passing, Maddie looked at her mother and asked, “Why are you crying? Heaven is a good place.”
The Butterfly Fund will host their annual black tie gala March 29, 2014 at Hunter Valley Farms in Knoxville, TN.
For more information, go to www.butterflyfund.org
About the Author: Tasneem Yusuf
Related Posts
« Weathering the Storm: Life after Bankruptcy Letter from the Editor »
