Inspiration for ‘Dana’s Angels’: Dana Marella loses battle with rare genetic disease

Dana Marella, center, with her parents, Andrea and Phil Marella, in 2012. She died on Friday night from an ultra-rare genetic condition. — Ken Borsuk photo

Dana Marella, center, with her parents, Andrea and Phil Marella, in 2012. She died on Friday night from an ultra-rare genetic condition.
— Ken Borsuk photo

Greenwich resident Dana Marella, who inspired people around the world through her battle against the deadly genetic disease known as Niemann-Pick type C (NPC) died on Friday night, according to her parents. She was 19 at the time of her death.

NPC is an ultra rare and fatal metabolic disorder that has been referred to as “children’s Alzheimer’s.” The disease causes cholesterol and other fatty substances to accumulate in cells in bone marrow, lungs and, most dramatically, the brain.

According to her parents, from the age of five, it was apparent that Ms. Marella had visual and learning difficulties. After years of searching for the cause, she was diagnosed at the age of eight with NPC. From that time on, Ms. Marella’s visual and cognitive abilities, and her balance, became progressively worse. She was gradually robbed her of her ability to walk and talk, and was confined to a wheelchair, no longer able to speak and requiring constant care at the time of her death.

However, the fact that she even made it to the age of 19 was hailed as a breakthrough by her parents who told the Post in a past interview that children with the disease do not typically live past their early teens.

In an interview with the Post, Ms. Marella’s uncle, Bill Marella, spoke of his niece’s kind and loving nature even in the face of her debilitating disease.

“She was the kindest, gentlest, most loving young lady that touched so many people’s hearts with her smile and just by reaching to grab your hand,” he said. “It’s hard to impress upon those that never met her how so simply with her smile and touch she was able to connect with people and inspire them through her travails and life,” he added.

It was also Ms. Marella’s positive attitude that touched those around her, her uncle said. At the first opportunity, even lying in a hospital bed, she smiled through the challenges and gave her parents, Phil and Andrea Marella, whom he referred to as “superhumans,” “so much encouragement,” he said.

“We are all the better for knowing her,” her uncle said.

After Ms. Marella’s diagnosis in 2002, in order to help their daughter as well as their son, Andrew, who also has NPC, the Marellas founded the Dana’s Angels Research Trust (DART). The nonprofit organization holds yearly events to raise funds for medical education, hospital care for treatment of the disease and, above all, critical research to help find a cure. The Greenwich family’s fight against NPC has attracted national attention and yearly DART fund-raisers have brought in major acts like The Beach Boys, Natalie Cole and Smokey Robinson as concert headliners.

In a 2012 interview with the Post, Mr. Marella spoke of the progress DART had made in terms of treating the disease.

“We started DART 10 years ago and the first drug trial started two years later,” Mr. Marella said. “In that eight-year period of time, we will have actually seen the start, we hope, of three drug trials. That’s pretty phenomenal for any disease. I have been told by scientists that there is not a genetic disease out there moving any more quickly than Niemann-Pick.”

According to Bill Marella, DART continues to make significant progress in the treatment of NPC, helping children of all ages put up a stronger fight against the disease from an earlier age. Such is the case with Andrew, now aged 14, who is “doing beautifully” as a result of his parents’ organization and the talented researchers who make use of DART funding, he said.

Also helping the Marellas to weather the fight against NPC, fellow Greenwich residents have shown a tremendous outpouring of support, Andrea Marella said in the 2012 interview.

“This community has been so good to us,” she said. “People want to help us. We’ve really been blessed to get this kind of reaction from the community, and now that we’re seeing the results from the medical community, we feel like we’re being rewarded for making a good effort.”

A wake and funeral for Ms. Marella were held earlier in the week and the family asked, in lieu of flowers, that a memorial donation be offered to DART either by mail at 15 East Putnam Avenue, #117, Greenwich, CT 06830 or online at DanasAngels.org.

“We are so grateful to all those whose prayers and good wishes continue to bless Dana and give our family strength,” the Marellas said in a brief statement last week.

 

Post Editor Ken Borsuk contributed to this story.

 

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