Dana Jesse Marella died peacefully on Friday, July 12th, 2013 from complications resulting from Niemann-Pick type C disease. She was only 11 days from celebrating her 20th birthday. She fought a courageous battle for the last 12 years since she was diagnosed at the age of 8. Once an energetic, happy little girl, Dana eventually lost all her abilities and was confined to a wheelchair. She was unable to walk, talk, had a feeding tube and last year, needed a tracheostomy. Despite her severe challenges and numerous hospitalizations, she never lost her sweet nature, always reaching to hold a hand, making her so deeply loved by all who knew her. Her strength and perseverance were a constant inspiration and taught people the true meaning of life and to appreciate each day.
The number of people who paid their respects and sent letters and mass cards was overwhelming, a sincere indication of how much she was loved. As Drew Williams, Senior Pastor of Trinity Church, posed in his eulogy, “Dana’s life often felt like a race against time…Was the race lost? Dana’s life, the way she ran the race before her, was a lesson for us all in the power of love.”
The Marella family is committed to continuing their efforts to find a cure, stating that “Dana must be the last child to lose their life to this horrible disease.” DART will hold its annual gala next spring as usual and it will be a tribute to Dana’s life. We encourage everyone to attend, support this very urgent cause and put an end to the heartache and pain suffered by all the NPC children and their families. As Drew also stated, “We all came to the DART fundraisers because we wanted to give something— and no matter how much we gave, we all left richer than we arrived.”
In the words of Cindy Parseghian, who lost three children to Niemann-Pick type C, “Our children are a gift, no matter how short a time they are with us.” Dana was truly a gift. She is in a better place now, where she can run and laugh and sing and be everything she could never be in this life. We, her parents, watched over her for almost 20 years. Now she can watch over us. What a blessing that is.