2009 Letter

How many times have you heard, “You’ll never forget your first?”  Usually some sarcastic or witty remark follows but many times you dothink of the many firsts you’ve experienced.  Your first bike and car, your first time over the Cape Cod bridge, your first kiss of course, etc.  Life is full of many wonderful firsts. Conversely, there may be just as many not-so-pleasant firsts.

I was doing some Spring cleaning recently and came across our eight-year-old daughter’s first prescription.  Deirdre won’t remember as she was just two weeks old having been diagnosed with Cystic Fibrosis (CF).  The prescription was for a half a capsule of pancreatic enzymes with each bottle.  This allowed her body to break down the formula so she benefited from its nutrients, gain weight and grow.  [Enzymes? What are those? Babies simply eat, poop and grow, right?]  We walked away from Children’s Hospital that day with glazed eyes, heavy hearts and a type of fear we’ve never experienced – a first for both of us.  From that day forward we’ve had many firsts – many good ones and some not so great.

Deirdre still takes enzymes with each meal and averages ~ 130 pills, including vitamins, each week. She also does daily nebulizing treatments along with chest physiotherapy to dislodge mucus from her small lungs in order to prevent infections. She’s an amazing child.  With an expected median age of 37 years for CF patients, we’re doing all we can to give her the opportunity to experience many more firsts.  We want to make sure she experiences her first date, her first car, first year at college, her first child, etc.  Many we all take for granted.  In order to provide her and all those with CF many more tomorrows we must find a cure for CF.

Cystic Fibrosis is a genetic disease which affects the glands that produce mucus, tears, sweat, saliva and digestive juices. The most serious threat is respiratory failure caused by a thick mucus buildup that harbors bacteria which causes lung infections.  This is our biggest fear as these infections can inflict the most permanent and life-shortening damage – God only gave us one set of lungs.  Deirdre is an amazing child and never complains as this is the only life she knows.  As she’s getting older she does ask more questions and we must answer them delicately not wanting to scare her or her sisters.  Her sisters are phenomenal and, along with her mother, deserve much of the credit in keeping her out of the hospital and relatively healthy.

Over the past seven years we’ve raised close to $150,000 for Deirdre’s Team during our annual Cystic Fibrosis Foundation sponsored Great Strideswalk… we need to raise money FIRST in order to fund research leading to an eventual cure.  This walk is the largest national fund-raiser, as it raises money to support research and drug development.  Nearly 90¢ of every dollar raised goes to research.  As her parents we cannot stop our efforts until a cure is found.  We owe it to Deirdre and all the other kids and adults with CF.

I’ve heard of people having a mortgage burning party after they’ve paid off the obligation – we’d like to have a prescription burning party! But, you guessed it, we need a cure first.  Please help us.