2019 Letter
On The Floor, Off The Court
Me? Writer’s block? After writing these letters for 17 years they should come easy to me. Maureen says it happens to everyone…
I could write one of these every day of the year – not sure of the quality, though. But this year I have to encapsulate two hospitalizations for Deirdre (18) yet tell you how blessed we are that these are just the 2nd and 3rd time she has been admitted.
I also need to write how each one of these just knocked her down both mentally and physically. She was on IV antibiotics 4 times a day for two weeks; and during the 2nd hospitalization she had to miss a Celtics game giving up on-the-floor seats (courtesy of a great friend). I think that hurt the most.
Being on a floor of Children’s Hospital is not the same as the courtside seats! On the floor, off the court.
She’s tired of being poked, awoken and asked how she feels on a scale of one-to-ten. She’s even tired of the 24-hour Au Bon Pain (they don’t have Fries anyway).
You should hear also that she’s apprehensive and downright nervous about heading to college in the Fall. How will any of the above be handled by a college student not under her parents’ roof?
That’s what I can write about: the cure for cystic fibrosis (CF)! How close it is and within our reach.
Deirdre was born with CF – a life-threatening genetic disease that makes the body produce thick, sticky mucus that clogs the lungs and leads to respiratory infections and other problems. She lives with it every single day from the pills, multiple inhalers / nebulizers, nasal rinses and sprays and a vibrating vest that performs chest physiotherapy freeing her lungs of the mucus that builds up.
The cure is real and it’s close. Not just treatments but a cure.
She takes a cutting-edge drug that didn’t exist a couple of years ago. There are many in the pipeline that are even more promising. Medications like these are stopping the disease in its tracks, providing hope for patients and families.
Maureen, Leah (22), Tess (19), Deirdre and I participated in the CF Great Strides Walk in Wakefield, MA on May 5th.
It’s never too late to donate – no cure yet and we will not give up.
Deirdre wants to spend more time on the Celtic’s floor, not the floors of Children’s Hospital. Not a lot to ask. Can we count on you?
We will not give up until there a cure. Please keep all those with CF in your prayers.
Thank you very much,
Peter & Maureen
P.S. Last year we raised more than $30,000 bringing our total to more than $425,000 since we started 17 years ago. Thank you very much for all you have done!!
