Point of View

The Time is Now
Margarete Cassalina

Marc, Margarete and Eric (age 21)

“What is cystic fibrosis?”
“How did he get cystic fibrosis?”
“How bad is cystic fibrosis?”

These were the 3 questions I naively asked the pediatric pulmonologist in the Neonatal Intensive Care Unit at Westchester Medical Center who just told me my newborn son, Eric, tested positive for cystic fibrosis (CF).

She answered me in one sentence, “CF is a fatal genetic disease.”

She then added Eric’s median life expectancy was 19. I was 22.

That was 1991.

That was unacceptable.

All I kept thinking is that I needed to do something.  Anything. I remember thinking to myself, If not you, then who?  And the time to do it is now.

My husband Marc and I immediately started fundraising for the Cystic Fibrosis Foundation in any way possible.  I believed then, as I believe now, the only way to save my child was to fund the research to cure it.

My daughter, Jena, was also diagnosed with cystic fibrosis. Unfortunately, her expression of CF was more severe. From 1993-2006 she was hospitalized 15 times.  Hospitalizations or “tune-ups” as they are referred to in the CF community were defined as a 3-4 week stay in the hospital with around the clock IV antibiotics, nutritional supplements, and rigorous courses of Chest Physical Therapy.  By age 5, Jena needed a feeding tube surgically placed in her stomach to meet her 4,000+ daily caloric requirement.  At age 11 she needed oxygen.  By age 12, Jena’s lung function was at 19% and in October 2006 she was evaluated and accepted for a double lung transplant.  That lifesaving transplant never happened.  On December 4, 2006 my daughter lost her battle to CF.  She was only 13.

I’ll never be ok.

And I’ll never stop.

Jena lived life to the fullest, even with 19% lung function she rode her 4-wheeler, rock climbed, and spent hours giggling with her friends.  Life is about what you do now…and Jena lived that.
Life is meant to live in spite of cystic fibrosis.

And as a parent, I want Eric to continue to live his life with the perseverance and the determination that makes him as amazing as he is.  My son should worry about his 401K, his 30 year career, what to name his children and never worry if he’ll have a tomorrow.  At 22, Eric has a career at Merrill Lynch, has an amazing girlfriend named Danielle, and plays golf with a bunch of his friends on the weekends.  Eric has an incredibly sharp wit, a sense of humor, and the ability to let the small stuff remain small.  As you can see, I am a very proud mama.

And again, looking toward his future I ask myself, If not you, then who? And the time to do it is now.

Marc and I continue to fundraise, we became involved with Public Advocacy over a decade ago, and Marc became a Board Member. I speak nationally about cystic fibrosis to raise more awareness and funds because…the time is now.
We are so very close to crossing that “cure” finish line.

Since 1991, I’ve seen the drugs go from conception to FDA approval; my children have used those drugs, drugs like Pulmozyme, Tobi, and Cayston.  Those vital drugs bought me more time with my daughter and are continuing to buy more time for my son.

In the 22 years that I’ve have been involved with the CF Foundation, the MEDIAN life expectancy has gone from 19 to 41!  In 1991, there was a limited number of accredited CF Care Centers nationwide…now we have over 110. There was no newborn screening for CF…now all 50 states are committed. There was no CF therapeutic drug pipeline…now there are over 33+ drugs and therapies to stop CF in its tracks.

This excites me for the future.

However, with all the progress made, we still lose young lives to cystic fibrosis every day.

So I continually ask myself, If not you, then who? And the time to do it is now.

We need money to get those potential drugs from the CF research labs into the hands of those who so desperately need them. We can’t afford to leave any potential treatments on the table.

As my daughter once told me, “Pain is not a valid reason for stopping.” It has been the single best advice I’ve ever heard.

When will I stop?  Until.

Until I can wrap my grandchildren in my arms and tell them what their daddy used to have.

And the time to do it is now.