This is something I wrote for a company newsletter ( I work for Liberty Mutual). We’re starting our yearly charitable giving campaign and our office was soliciting stories from employees about why we support the charities we do. I hope it will educate and inspire you.
When my niece, Eliza was born in 2005, she weighed barely five pounds, but because she was above the threshold doctors define as “low birth weight”, she was considered healthy. Unfortunately, as time passed and she wasn’t gaining weight like an infant should, we knew something was terribly wrong. After many tests, blood transfusions and medications that did not work, Eliza was diagnosed with cystic fibrosis at the age of four months. Her problems with weight gain and malnutrition came from the fact that this disease attacks the pancreas in the same way it does the lungs; mucus clogs the organ’s enzyme-producing cells, and as a result, the body cannot absorb the nutrients it needs to thrive. Eliza was one of the lucky cystic fibrosis patients, as she was diagnosed at an early enough age to begin the medical regimens that most patients don’t receive until they’re older and have suffered often irreversible pancreatic and lung damage. She was assigned a team of doctors at the Medical College of Virginia, including a nutritionist and pulmonologist, and she slowly began to respond to the treatments. To see her today, you would never know she has a chronic illness.
In May, 2005, just before Eliza’s first birthday, I participated in my first Cystic Fibrosis Foundation Great Strides walk, in Deerfield, Massachusetts. The sponsors were a family whose 22 year old son had passed away from cystic fibrosis while he was a student at the University of Massachusetts. For every successful story like my niece’s, there are hundreds of stories of children and young adults who have succumbed to this, as yet, incurable genetic illness. I walk for them and for my own family. My friends have been a great support system, and each year we raise hundreds of dollars which I donate to the Massachusetts/Rhode Island chapter of the Foundation. These contributions not only help scientists look for a cure, but also promote research into new treatments and antibiotics to treat the illnesses cystic fibrosis patients are susceptible to. As cystic fibrosis is a relatively rare genetic illness, I also take the time to educate my friends and colleagues to promote awareness of the disease and the impact it can have on someone’s life. Together we can make CF stand for “cure found”.