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A Legacy of Love

For years Andrea and Phil Marella lobbied for the approval of clinical drug trials that might have saved their daughter, Dana, from a rare disease. Though it’s too late now for Dana, the Marellas are fighting harder than ever

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She suffered from an ailment that was guaranteed to take her life. Her condition had been declining for years. And yet, when Dana Jesse Marella died in July, eleven days shy of age twenty, it came as a shock to her parents and many others whose lives she had touched. “Even though for twelve years we knew that Dana had a fatal disease, we had really come to the expectation that we were going to be able to get her what she needed to always be with us,” says her father, Phil Marella. “We thought that progress would come quickly enough to save her, even if it was in a more limited life.”

Before Niemann-Pick Type C, a neurodegenerative condition brought on by an inability to metabolize cholesterol, whittled away her physical and mental faculties, Dana was the happiest of children, with a contagious laugh and a disarming smile. “One of her friends used to say that everybody loves Dana because she never has a mean word to say about anyone, that she’s always so nice,” remembers her mother, Andrea. “I guess that was a unique quality, but she was always that way.”

For all the memories her passing evoked in family and friends, Dana’s greatest legacy may be in having served as the namesake and inspirational force behind the Greenwich-based charitable foundation, Dana’s Angels Research Trust (DART), which her parents launched to fight Niemann-Pick Type C. She would become known far and wide as her parents set off on a determined quest to raise money and help find a cure for the disease. Hundreds of mourners filed into Leo P. Gallagher and Son Funeral Home last summer to pay their respects at her wake and filled the St. Catherine of Siena Church in Riverside for her funeral. “Phil and I stood for five straight hours at the wake,” says Andrea. “It went an hour overtime and they finally had to shut the doors. That’s how many people came and waited in line.”

And it wasn’t just in Greenwich that people mourned. Her father, who has come to know researchers and others involved in the fight against Niemann-Pick from around the United States and abroad, says he was overwhelmed by the response when after the funeral he returned to attending conferences and other meetings related to the disease.

“To have people from all over the world come up to me with tears in their eyes, and hug me and say that they just can’t believe Dana’s gone was so moving,” says Phil, an attorney in the television industry. “She wasn’t the only kid in the world with Niemann-Pick, but most everybody knew who Dana was.”

A Family Battle

Back in 2002, when Phil and Andrea learned that their daughter had Niemann-Pick Type C, it was thought that Dana would live no longer than her early teens. She was eight at the time. “I cried every night,” remembers her mother.

Three years later, they received another blow: son Andrew, now fourteen and the youngest of their children, was diagnosed with the condition as well. Both Dana and Andrew would eventually be treated with experimental drugs. And though the medication came too late for Dana, Andrew has largely staved off progression of the illness and its more debilitating symptoms. The Marellas’ other children—Julia, who is twenty-two, and Philip, seventeen—apparently have been bypassed by the disease.

The years have brought their share of emotional challenges for the Marellas. Indeed, having two children with such a malady is among the heaviest of burdens to carry. Dana’s decline demanded constant care and hospitalizations. When her condition was at its worst, Andrea would describe their home as a “virtual hospital,” complete with a special bed in their daughter’s room, cabinets filled with medications, oxygen tanks and medical equipment of all sorts. “We have our own kind of normal,” Phil liked to say.

Rather than surrender to the disease, the couple chose to battle back. Just months after Dana was diagnosed, they founded DART, which has since raised more than $3 million to help scientists find a cure.

The Marellas have never taken salaries. Donations to the charity are directed toward scientific research. In the process, Phil and Andrea have become respected voices in the drive to spur scientific investigation and clinical trials for drugs that might extend and even save the lives of the afflicted. Phil has gone before the U.S. Food and Drug Administration to help in the efforts—unsuccessful so far—to win approval for one of the drugs, Zavesca, to become an official treatment for Niemann-Pick Type C. Dana’s Angels has even helped sponsor post-doctoral fellowships and medical internships to encourage greater involvement by the scientific community in taking on the disease. With only about 200 known cases of Niemann-Pick Type C around the country, it’s not a condition that researchers, or financial donors, typically hear much about.

As Dana’s passing would show, the Marellas’ work is truly a matter of life and death. “They’d do anything in the world for their children” says Kathie Lee Gifford, the television personality and Greenwich resident who with her husband, Frank, has hosted the group’s fundraising event for seven years. “And they don’t take no for an answer.”

Many a marriage has collapsed under the weight of a child’s devastating illness. Much of the time and energy of one or both parents suddenly becomes channeled toward that child, whether it’s for hands-on care or trips to doctors or extended hospital stays. Priorities change. Stresses mount. Sometimes one parent will be in denial. Another may be unable to cope with the new demands, or his or her grief.

“It can go one of two ways,” says Andrea, who met her husband when they both were working in corporate planning at ABC, Inc., the parent company of the television network, during the eighties. “The divorce rate is 50 percent as it is. Then you bring in critically ill children and it could be that much worse. Or it could go the other way and make you even stronger together and bond you. That’s what’s happened in our case. It has truly forged our relationship and made us lean on each other even more.”

Their healthy kids, Julia and Philip, have received less attention from their parents than they would have under normal circumstances. Still, Phil and Andrea have always tried to give each of their children individual time and support. Andrea’s lifelong friend Cindy Schaffer remembers one day last spring when she sat with Dana, who had been hospitalized for a serious infection, so that Andrea could be home to see son Phil off for the SATs. (The elder Phil was out of town.) “She wanted to be there to make him eggs and make sure he had pencils, that kind of thing,” says Cindy.

And last spring, Andrea and the boys managed to attend Julia’s graduation from Loyola Marymount University in Los Angeles. Phil, however, had to remain with Dana, whose sodium levels had suddenly climbed precariously high and required a few days’ hospitalization.

Family vacations have been out of the question. A few years ago the Marellas did manage to arrange for a few days of splashing in the waves at Virginia Beach before heading to Bethesda, Maryland, for a National Institutes of Health (NIH) observational study of Niemann-Pick kids, but even that required the kind of planning that goes into a military operation. A hospital bed, for example, had to be brought to their hotel room for Dana before they arrived. And every morning, Phil and Andrea would administer her treatments and medications while the other kids waited. When they finally got around to hitting the beach, Phil and Andrea would take turns accompanying the boys down to the water —Julia was away at college—and wheeling Dana along the boardwalk.

After Dana died last summer, the family planned to take a much-deserved respite in Bermuda. The night before they were to depart, Andrew suffered a series of seizures, which he had never experienced before, and the trip was called off. Whether the attacks were related to Niemann-Pick or other causes, such as anxiety, remains unclear. What was obvious, however, was that the disease remains a tangible threat.

The stresses have been considerable. “Basically, we are Christians,” says Andrea. “We truly believe that you pray and God gives you the strength that you need. Sometimes I say, ‘That’s enough, God,’ but truly that’s what’s gotten us through all this.”

Rather than dwell on their lot, the Marellas are more likely to be found consoling others. Andrea’s friend Maria Pope Kessel, a former Greenwich resident who now lives in Bedford, remembers being at an event-planning meeting at the couple’s house with some other mothers one day last winter when word came down that Greenwich High School was being locked down because a student was (mistakenly) said to be wielding a gun. Several of the moms, including Andrea, had kids in the school, and they rushed over, as close to the scene as the police would allow.

Coming on the heels of the killings in Newtown, everyone was on edge. “This is what strikes me about Andrea,” says Maria. “Her son Philip was a junior at the high school. She was nervous and upset like everyone else, but she was the one comforting everybody, hugging everybody and saying, ‘No matter what, we’ll get through this.’”