When I was working in television there were a handful of stories that I took great pride in telling. One of those stories was that of the Marella family. I met them as they were starting a foundation to raise awareness about and research dollars for a rare disease called Neimann-Pick type C. Their daughter had been diagnosed with the disease and they were watching her deteriorate from the healthy joyous 8 year old they had once known. At that time there was very little hope for Dana’s future and the medical options for Dana were limited. The toughest moment in our interview was when Phil and Andrea, Dana’s parents, revealed to me that Dana’s younger brother Andrew had just been diagnosed with the disease as well. Because of what they had seen happen to Dana they knew what his future would hold if they didn’t find a cure quickly. I wasn’t a parent at the time – but I remember being overcome with tremendous grief as I thought of these two parents desperately searching for a cure to save their children’s lives.
More than five years later I moved back to Greenwich and started attending Trinity Church. It was there that I ran into Dana and her family one Sunday morning. Dana was in a wheel chair and her parents told me that secondary complications from NPC kept Dana perpetually in and out of hospitals. I could tell that she was in tremendous pain yet she still had the sweetest smile on her face as her parents lovingly brought her to and from church each week when she was well enough to attend. I was so relieved to see that drug trials had kept Andrew’s disease at bay and he was thriving and living a completely normal life. I saw firsthand the difference medical research and medications could make. When Dana was diagnosed there just wasn’t enough research or drugs to try so her disease progressed much more rapidly. Tragically Dana died last year. I am not surprised because I always knew her parents were warriors, but I am still in awe of their determination and steadfastness to continue their work with Dana’s non-profit despite all they have been through since her diagnosis.
When I reconnected with the Marellas I was reminded of the good that can come from sharing our stories. This family has done so much to change the face and future of this orphan disease. Let’s continue to tell stories that matter. Let’s listen to them and rally around those in need. I will do it here on my site but I hope you will spread the word as well. It’s the only way we can bring about meaningful change. Please consider attending the DART event this Friday night in Stamford (details below) and if you are not able to attend remember that no donation to their cause is too small. Every dollar is getting them closer to a cure.
Q&A with Andrea Marella, co-founder Dana’s Angels Research Trust
What is DART?
Dana’s Angels Research Trust was started after Dana was diagnosed with Niemann-Pick type C at 8 years old. People wanted to donate and help us, so this was the best way. DART is our family foundation to raise funds for medical research of Niemann-Pick type C, a rare degenerative and fatal disease that afflicts mostly children.
What is Niemann-Pick type C and how has the disease affected your family?
Niemann-Pick disease type C is an inherited condition in which the body cannot properly metabolize cholesterol and fats, resulting in an excess of these substances in the body. Cholesterol buildup in the liver causes severe liver disease, and fat accumulation in the brain leads to learning disabilities and progressive neurological symptoms.
Three years after learning about Dana, we discovered that our son, Andrew, who had just turned 5, also had NPC. He too had an enlarged spleen when he was an infant so we always suspected that he had the disease. When the first drug trial was to begin and Dana did not qualify as she was too far progressed, we had to have Andrew checked in case he could be in the trial. Eventually, our insurance covered both of them.
What was Dana like before the disease? What was her quality of life like after the diagnosis?
Dana was a beautiful and energetic little girl who loved ballet, karate, girl scouts and being with friends. She was popular and well loved by so many. That never changed even after she was diagnosed. Her abilities gradually declined, from balance issues to speech. She went from a walker to a wheelchair by the time she was 11. She lost her ability to speak and eventually needed a feeding tube for nourishment. In the last year of her life, she had a trach to help prevent pneumonias. This disease robs kids of everything before it takes their lives.
What kind of research had been done for this disease when Dana was diagnosed?
There had been some research done thanks to the Parseghian Foundation. Cindy and Mike Parseghian (son of famous Notre Dame football coach, Ara Parseghian) had 3 of their 4 children diagnosed with NPC. They have since passed away. When Dana was diagnosed, we were still waiting for the first drug therapy. We waited 3 more years so Dana only started at age 11.
What has DART been able to accomplish since it was created?
DART, through the generous donations of our community, has helped launch 3 drug trials with a 4th scheduled for this fall. And a 5th in the works. My husband, Phil, is very involved with the researchers around the country which include major institutions like Mayo Clinic, Albert Einstein, Washington University in St. Louis, University of Penn, University of Texas Southwestern, and Mt. Sinai.
How did medicine/research help your son Andrew after he was diagnosed?
Andrew has had the benefit of getting Zavesca (our first therapy to slow down the progression) when he was 5, and he is now in the 3rd drug trial receiving Cyclodextrin at the National Institutes of Health in DC. We go there monthly where he has a spinal tap to administer the drug.There are high hopes for the benefits of this drug. Researchers believe that it will take a cocktail of medications to be really effective as potential cures.
Why do you do what you do for DART?
Phil and I will continue to raise funds for research until a cure is found. It is our mission to save not only Andrew but all the kids suffering with this terrible disease. After losing our Dana, our determination is even stronger.
What is your message to other parents whose children are diagnosed with this disease?
For all parents who have children diagnosed with NPC, we share your grief but know that research is moving rapidly, thanks to the many doctors and researchers who are as committed as the parents themselves, and thanks to the families who, each in their own way, help the cause and fundraise in their own communities, knowing that every dollar counts.
How can people help your cause?
We are grateful to our community for all the support and compassion demonstrated over the last 13 years. Without that, research would not be where it is today and our family would not have the strength to continue this mission. Our event this Friday, May 30th, at the Palace Theatre in Stamford,with KENNY LOGGINS as headliner will be another huge success for DART and for the search for a cure. We know it. Kathie Lee and Frank Gifford will once again be our hosts and Scott Shannon of WCBS-FM will introduce Kenny. We have many fantastic auction items, including tickets to the owner’s suite at a NY Giants game, a trip to St. Barths, a meet and greet with Mark Teixeira with 4 Legend seats at a Yankees game, a signed Kenny Loggins guitar, and so much more. This night is truly special to us as it will be a tribute to our precious daughter, Dana. We want everyone to join us this Friday. Tickets start at just $30. And all proceeds go to DART. For more information, go to www.DanasAngels.org.
wow…truly inspiring Lindley – thank you for sharing…