Dana Jesse Marella, a Greenwich resident who had battled a rare degenerative disease singe the age of 8, passed away last Friday, 11 days before what would have been her 20th birthday.
Dana Marella was diagnosed with Niemann-Pick type C disease, a genetic disorder in which harmful quantities of cholesterol and other fatty substances accumulate in the cells of the spleen, liver, lungs, bone marrow and the brain.
When Dana was first diagnosed with her illness, her parents, Philip And Andrea, were told that their daughter would not live pass her early teens. The Marella’s were determine to fight the deadly disease and in 2002 they started a non-profit organization, Dana’s Angels Research Trust (DART), to fund medical research aimed at finding a cure.
At age 11, Dana received her first dose of an experimental drug, which her mother said helped her by slowing down the progression of the disease, but because she received the medication three years after she was diagnosed, the damage had already been done.
Andrew, one of the Marella’s three other children, was diagnosed with the same disease, which according to DART’s website there are only about 500 diagnosed cases worldwide, two years after they founded their non-profit organization.
Andrew received his first treatment when he was five, and today at 13, although he has speech and comprehension issues, he is able to communicate and ride his bike.
Dana, who was the second of the Marella’s four children, leaves behind two other siblings, Julia Grace and Philip Daniel, who do not suffer from the illness, her grandmother Lucinda Marella and several aunts, uncles and cousins.
Dana Marella was buried on Tuesday July 16.
To find out more about Niemann-Pick C and DART go to www.DanasAngels.org
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