Cystic Fibrosis: How the Cassalina Family of Milton Cope With the Disease

Breathing room: Facing the unfathomable, an Ulster County family becomes active advocates against cystic fibrosis



Family ties: The Cassalinas — Eric, Marc, Jena, and Margarete — in 2006

Photographs courtesy of Margarete Cassalina

While waiting for son Eric to return from work, Margarete and Marc Cassalina sit in the kitchen of their Milton home, a picturesque colonial with a long driveway where Atlas, a rambunctious German Shepherd puppy, is playing. The irony of chatting with this reporter, of course, is not lost on the couple.

“When Eric was born in 1991, he was diagnosed with cystic fibrosis on day three,” Margarete says, picking at some fruit. “That first week, Marc and I are saying to each other, ‘We’re not telling anybody, we’re not telling anybody. We’re keeping this as our personal secret so he can live a normal life. We’re not talking to anybody about cystic fibrosis.’ ”

They lock eyes across the kitchen table. Margarete smiles. Marc laughs.

“Yeah,” he says, “that lasted about 10 days. Now we talk to everybody about CF.”

And by everybody, they mean everybody. Over the past 20 years, the Cassalinas have transformed themselves into nationally known advocates in the fight against the debilitating lung disease that their son battles every day. Their story is particularly heartbreaking: The disease also claimed the life of their daughter Jena in 2006 when she was just 13 years old, a journey that Margarete chronicled in her inspirational 2009 book, Beyond Breathing.

Cystic fibrosis is a chronic, inherited disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States. About 1,000 new cases are diagnosed each year, 70 percent of them by age two. A defective gene causes secretions like mucus and digestive juices to become thick and sticky so that they plug up tubes, ducts, and passageways, especially in the lungs and pancreas. People with CF suffer from frequent lung infections, many of them life-threatening.

There is no cure for CF. In the 1950s, few children diagnosed with the disease would live to be teenagers; today, life expectancy has increased dramatically, with many affected by the lung condition living into their 30s, 40s, and beyond. Treatments include everything from medications and bronchodilators to chest physical therapy and surgery, including lung transplants — all in the name of breathing.

Breathing.

What most of us take for granted every day is a sometimes painful, laborious chore for CF patients — and another piece of irony for Margarete and Marc. Jena was awaiting a double lung transplant in Pittsburgh in December 2006, struggling with the last few breaths of her life, but fighting, always fighting. When her lungs were at 19 percent capacity and could no longer pump or filter even a wisp of air — when Jena “moved up” to heaven, as Margarete and Marc call it — their own lungs filled with huge, heaving breaths and sobs. Margarete says it was as if they had too much oxygen.

“Jena was never made for IVs, hospitals, or oxygen tanks… She was made to live, laugh, and love” — Margarete Cassalina

“I think it was February before I came out of the fog,” she says of that time. Marc took three weeks off from his job as a vice president at Merrill Lynch, struggling to balance his own grief with the need to be strong for his wife and son.

“I’m a financial planner, so I’m always thinking ahead,” he says. “As soon as Jena moved up, I couldn’t see tomorrow at all.”

Their support system was strong. Marc was born and raised in Milton, and on the street where they now live, they are surrounded by no less than 47 members of the Cassalina family. The book came as a result of Margarete jotting down thoughts and memories of her daughter, which family and friends encouraged her to publish.

Margarete recalls that Jena was a fighter, plain and simple. In fact, one of the iconic photos the Cassalinas keep in their home is one of Jena sporting a pair of boxing gloves. In Beyond Breathing, Margarete wrote: “She was never made for IVs, hospitals, or oxygen tanks. She was made for riding four-wheelers, riding her bike, playing with her friends, going to school. We called her our Energizer Bunny... She was made to live, laugh, and love. She did those things better than anyone I’ve ever known.”

Through their grief, however, the couple still had to tend to a son with CF. While Jena’s case was more severe — she had had double pneumonia by the time she was four months old — Eric had fewer complications throughout his childhood. He played baseball, took karate, and still plays golf with his father. “If their health held them back from doing something, it was always a delay, never a cancellation,” says Margarete of her children. “We never, ever let CF dictate what they wanted to do.”

There are, of course, hurdles to overcome. Eric’s day consists of two hours of chest physical therapy, and two to three hours of nebulized treatments; he has two inhalers, and swallows 72 pills a day. And then there is just life — which includes college, work, his girlfriend, and golf. “Truth be told, it’s life that uses up a lot of Eric’s energy. He gets tired easily, but he pushes through because his life is worth the effort,” says Margarete.

margarete cassalinaFighting words: Margarete Cassalina (above) works at a desk surrounded by photos of her daughter, Jena, and other family members. At right, the Cassalinas speak at a Cystic Fibrosis Foundation event

cassalinas at event

The couple’s advocacy work started not long after the children were born. First, they  participated in CF walks in Westchester; in 1999, Margarete cochaired a walk in Poughkeepsie. Eventually, the couple became active on the national level, serving as chairs of the Cystic Fibrosis Foundation’s National Public Advocacy and Volunteer Leadership committees, and as members of the foundation’s National Leadership Council. Today, Margarete is a featured speaker at events around the country; she either declines a fee or donates it to the foundation. Both she and Marc have worked Capitol Hill like seasoned lobbyists. “There are about 60 of us from all over the nation who do what we call ‘storming the Hill,’ where we spend the entire day in six to eight meetings,” says Margarete. “We’ve gotten the Cystic Fibrosis Congressional Caucus and a bill passed so far.”

The CF awareness and fund-raising spearheaded by the Cassalinas was also instrumental in the development of Kalydeco, which Forbes magazine called “the most important new drug of 2012.” Approved by the FDA in January 2012, it is the first drug available that targets the underlying cause of CF — a faulty gene and its protein product. The pill reportedly improves lung function and helps patients gain weight. (On the downside, it only works for about four percent of cystic fibrosis patients.)

The couple’s dedication has helped raise millions of dollars for the foundation and, since Eric was born 22 years ago, they have seen dramatic changes in the CF community. “I think the biggest thing for us has been life expectancy,” says Marc, noting that when Eric was born, CF patients had a life expectancy of around 19 years (it’s now close to 38). Margarete’s passion for the cause even extends to her car’s license plates, which read “65 Roses.” Young CF patients, she explains, often can’t pronounce “cystic fibrosis,” which comes out sounding like “65 roses.”

“When we started our Volunteer Leadership Initiative about 11 years ago, we chose Marc and Margarete,” says Ann Palmer, senior vice president of field management at the Bethesda, Maryland-based Cystic Fibrosis Foundation. “I love them. Margarete has that fantastic, energetic, emotional enthusiasm. She’s funny, she’s passionate, she’s the whole spectrum of emotion bottled up in one package.

Together, they are a fantastic couple. Volunteers across the country have come to identify with them. With their whole family, really.”
And that includes Eric, who has shown plenty of Jena’s determination and optimism. When Jena passed away, Marc and Margarete discussed buying four burial plots for the family to be together. Eric said they should buy five. When his parents asked him why, he replied, “Because I’m going to grow up and I’m going to beat this and I’m going to get married. The fifth plot will be for my wife.”

“Here he is, he’s 15, his sister just moved up, he knows he has what she had, but he’s sure he’s going to get married and have a wife,” Margarete says. She pauses for a moment, looking to the deck outside, where Atlas — named after the last book Jena read, Atlas Shrugged — is going to town on a chew toy.

She smiles.

“We live, you know? We live.”

See below for a video of Margarete speaking about her experiences coping with cystic fibrosis:

 

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