2011 Letter

There are many celebrations in life and, for the most part, we all celebrate them the same. There are the baptisms, birthdays, first communions, bar/bat mitzvahs, confirmations, weddings, etc. There are many more to fill in the gaps and they range from the impromptu casual get-togethers to the more formal. Birthdays, though, seem to crop up each year for every one of us. When we were younger we’d welcome the day but as we get/got older we often curse the day. We think of more gray hair, added aches and pains, flabby-this and saggy-that. But what if you had the opportunity to add many more birthdays to your life – would you dread it or welcome it with open arms? How would you celebrate each birthday if you could double your life expectancy?

I’m guessing the questions would be easier to answer if you thought you’d only live to be ~ 37 years old. In that case, then yes, living to 75 sounds pretty good.

Our youngest daughter Deirdre (10) has reason to be hopeful, and perhaps eventually celebrate, that she may live well beyond her current average life span of 37 years. She was born with cystic fibrosis (CF) and had she been born in the 1950’s she would not live to see her first birthday. Now the stats put her at an average age of 37 – outstanding accomplishments for which we are all grateful – but not good enough.

There has been tremendous progress in the treatment of CF and many advances towards a cure but within the past year, we can finally see a cure in sight. Since Deirdre is so young a cure doesn’t necessarily register with her that she’s adding years to her life. To her it means: not taking 130 pills a week, not having daily chest physiotherapy, no night-time nasal sprays, no weight enhancement pills to put on weight, not slyly taking her pills at school for fear of embarrassment, no visits to Children’s Hospital where they perform tests ranging from blood work to lung function, no daily nebulizer treatments, etc. A cure for her is freedom and independence, and being defined by who she is and not by a disease. Wouldn’t that be a nice celebration?

We share with Deirdre and her sisters our guarded optimism that a cure may be close. Deirdre awaits the phone call she’ll get announcing a cure and wants to know if it will be a pill or liquid (she’d prefer a pill). She’d like to be pulled from school early that day and have dinner at Friendly’s with the family. How would you celebrate if you were told you would double your life?

While a cure may be “near” we cannot celebrate just yet. Much work needs to be completed and everyone involved with CF knows one thing for sure: only money stands in the way of a cure – money provides more tomorrows for those with cystic fibrosis. While there is much for us to celebrate in life we cannot stop our efforts until a cure is found. Please help Deirdre and all those with CF.

Deirdre does all that is asked of her just to stay healthy. Please help her get closer to the day when she can celebrate the end to this terrible disease. Wouldn’t it be nice to be part of a team effort that puts an end to cystic fibrosis?