2010 Letter
During Holy Week, leading up to Easter Sunday, our family tries to make extra efforts to pray more together and to attend Mass and prayer services at our church. I found time to break away the evening of Holy Thursday to go to our chapel for a prayer service. It was very quiet and solemn with just a handful of people praying to themselves. As I was ending my prayers, it occurred to me that I left out one rather significant prayer…”oh, yes, and a cure for CF please”. Yikes!
How could I possibly forget to pray for a cure for cystic fibrosis (CF) when our nine-year-old daughter has been living with this horrible disease all her life? (And why would I be admitting this as well?) So I sat back down in the pew to rethink my priorities in life… why wouldn’t I pray for that first? We live and breath CF in our house and it’s on our minds all the time. She starts her days taking medication with each meal and snack and ends her days with nightly chest physiotherapy to dislodge mucus from her lungs to prevent infections. Either I convinced myself or I truly believe that I have implicit faith that there WILL be a cure and there WILL be better treatments for CF in the near future. I have faith, hope and dreams… but Maureen and I also live with the sobering reality that a cure needs to occur soon to help Deirdre and all others with CF. Too many lives are shortened each day.
Deirdre lives with CF every day of her life, from the enzymes with each meal, extra vitamins, the daily nebulizing treatments and chest PT, doctor visits, etc. Looking at her you would have no idea what’s going on inside that tiny body and how, with each day, the disease is taking its toll. She has an amazing personality and, as my mother used to say, she’s full of piss and vinegar. She’s a fighter but in a good way and that will come in handy when she gets ill. Not “if” but “when”. She endures it all because she has to and is smart enough to know that she wants to stay healthy. Maybe she, too, has faith, hopes and dreams.
There has been tremendous progress over the years in both extending the median age of those with CF to 37 and with improved treatments for a more comfortable quality of life. We believe, have faith and dreams, and are not going to give up. You must believe also. Since we began fundraising Deirdre’s Team has raised more than $165,000! We need to continue these efforts and once again call upon your generosity.
The Great Strides walk is the largest national fund-raiser for CF, as it raises money to support research, drug development and care programs dedicated to adding tomorrows to the lives of those with CF. Nearly 90¢ of every dollar raised goes to research. As a testament to this, she’s down to about 19 pills a day thanks to improved medications made available from fundraising activities such as this. We cannot stop our efforts until a cure is found. We owe it to Deirdre and all the other children.
Our family obviously centers around our three precious daughters. Each of them should have their own faith, hopes and dreams but for Deirdre they should not be too different from any other nine-year-old girl – please us help us fulfill her dream to find a cure for CF.
