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Nicole “Coley” Levine is our wonderful daughter who we tragically lost to Leukemia on October 22, 2004 at the age of six. Coley was diagnosed with Acute Mylogenous Leukemia (AML) in December of 2003 at Boston’s Childrens Hospital. It wasn’t long before we were told that the underlying cause of her AML was a genetic disease by the name of Fanconi Anemia (FA). The impact of Fanconi Anemia on her treatment protocol was enormous and ultimately insurmountable. This is because children afflicted with FA are highly sensitive to the standard treatment agents used to cure children with AML, whereby their fragile DNA is unable to adequately repair themselves after treatment, to a healthful state. As a result, in many ways, treating FA kids with AML has to be done on a case-by-case basis with no margin for error. With so few children falling into this category, research endeavors and statistical analysis are slow in coming. Many scientists and physicians however, are hard at work to more deeply understand the genetic pathway of the various FA gene mutations in hopes of reversing their fatal course.
If there was ever a child who possessed the spirit and toughness to endure the perils that these diseases impose, it was Nicole. Anyone who had the pleasure of knowing her instantly saw her as a feisty child who despite her small stature, always insisted on doing things her way and to never be left behind. Nicole was a fun-loving child who loved to play all types of sports, from gymnastics to soccer to T-ball. Whether jumping on her trampoline or riding her toy Harley Davidson around the yard, Coley always had a smile on her face. But most of all, her favorite thing to do was to play endlessly with her sister Marissa and brother Travis.
Coley had to endure far too many medical obstacles in her short life. There were several surgical procedures and puzzling metabolic and neurological testing that she had to suffer through, all because we had no idea what the root causes of her problems was. Even before she went off to NY to battle her leukemia, she was all too familiar and comfortable in the hospital setting. Nicole won over the hearts of countless hospital staff with her bravery and wonderful spirit. No matter what the procedure or trouble, Coley was always up beat, cooperative and humorous.
When it became clear that we had to pack up and bring Nicole to NY for treatment, her uplifting spirit was the one constant that always kept all of us hopeful and happy. Through many more surgical procedures, radiation, chemotherapy and endless testing, Coley kept smiling, kept laughing and kept her pride in that she was getting better. As expected, during her nine-month stay there, she won over the entire staff at Memorial Sloan-Kettering Hospital and the Ronald McDonald House for that matter. Once again, she became the object of all the nurses and volunteers affection.
Even during her last days with us in Boston, Coley fought hard to squeeze every ounce of life out of her ailing body. With her brother, sister, cousins and friends at her bedside, she played as hard as she ever had ... and cried horribly when it was time for them to leave. It was as if she knew it was her final play-time.
Coley has left us with lasting images of what it means to live life to the fullest. As a true hero to so many, she will always serve as an inspiration and example of bravery. She touched the lives of countless people she has met through her short and wonderful life, and many more that never got to meet her personally….but nonetheless shared in her journey.
To read more about Coley’s courageous struggle with Fanconi Anemia, visit her journal website at www.caringbridge.org/ma/coley.
Coley, you will always be remembered, never be forgotten and forever loved.
Mom & Dad
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