This is one year in which the raw data really does tell the story. So, as they say on public radio, let’s do the numbers:
71: Rose’s FEV1 as measured on Labor Day. Rose is my daughter, a high school sophomore. She has cystic fibrosis. FEV1 is “forced expiratory volume over one second” – a measurement of how much air you can blow out of your lungs. A ‘normal’ person, who doesn’t have cystic fibrosis, should have an FEV1 of 100. Go below 40 on a permanent basis and you need a lung transplant.
25: The number of days Rose spent in the hospital after that dismal FEV1 result.
$136,000: The bill for those four weeks, paid for by the kind of health insurance everyone deserves.
$0: The amount of money I had left after Rose beat me at Monopoly one night at the hospital. What can I say? The kid managed to get her hands on Boardwalk and Park Place – and then build houses on them.
0: Number of times the U.S. Senate voted to repeal the Affordable Care Act while Rose was in the hospital, despite repeated threats to do so. The Cystic Fibrosis Foundation was one of many mainstream healthcare organizations that pulled out all stops in an effort to preserve this critical protection for people with chronic illnesses.
8: Number of Tampa Bay Rays struck out by Chris Sale of the Boston Red Sox on September 9, when we strolled over to Fenway from the hospital to watch a game. Alas, Rose had to stay behind because being in the hospital as a CF patient is just like being an inmate in a supermax prison. The Sox beat the Rays 9-0.
1,656: Number of Morning Edition sports commentaries by Gold Star CF dad, former Cystic Fibrosis Foundation board chairman, and National Humanities Medal winner Frank Deford including his last on May 3, just a few weeks before his death.
2: Number of times U.S. Rep. Tom Marino (of Pennsylvania's 10th district) withdrew his name from consideration as the nation’s drug czar this year in disgrace. Marino, the only CF parent in Congress, was nevertheless a consistent and outspoken vote in favor of repealing the Affordable Care Act.
2: Number of U.S. Senators who heard Rose’s dad testify in Concord in June that repeal of the Affordable Care Act would be a cruel blow to CF families. At least two other folks from the CF community also testified. Thank you senators Shaheen and Hassan for listening!
… and finally:
103: Rose’s FEV1 as measured on October 11 – a few days after Rose left the hospital and returned to school. What an astonishing improvement – lung function literally better than perfect!
As such a remarkable year winds down, my heart is again filled with gratitude – to all of our friends and loved ones whose help and good wishes were so welcome while Rose was in the hospital, and to the Cystic Fibrosis Foundation (CFF). So, once again, I am offering up this annual opportunity to connect you.
I don’t know how it works with other diseases, but in the CF world the CFF is the mother ship.
They sponsor the research that has unlocked the secrets of the disease at the cellular and genetic levels. They partner with drug companies to develop the breakthrough therapies. They accredit the CF care centers to make sure high standards prevail. They keep the patient registry – a vast storehouse of data that makes it possible to understand how the disease really affects people. And they stand tall with CF families when Congress and the man in the White House need to be introduced to their consciences.
So, with each paycheck, I have my employer deduct some money and send it to the CFF. And, at the end of the year, I make a donation to the CFF’s annual fund. I invite you to do the same.
Consider doing it, this year, in memory of Frank Deford. I am sorry I never met the man. He was a real hero and you should read the book he wrote about his daughter, who died of CF at just eight years of age back in 1980. Thanks to families like the Defords, we have come so far since then.
Resources are scarce and this is a difficult time for our nation. We are all bombarded with requests for money from all kinds of worthy charities. But if it would give you pleasure to connect with Rose and her quest to live and thrive with CF, then please consider a gift to the CFF Annual Fund.
Thank you heartily!