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Greenwich residents Phil and Andrea Marella are fighting to find a cure for a rare genetic disease that afflicts two of their children. We were shocked when we found out, Andrea said of her children's diagnosis. But weve seen great benefits from the research weve been able to fund. Were parents working to raise money for research, looking to save our own children. We want everything possible done.
Dana and Andrew Marella have been diagnosed with Niemann-Pick Type C disease, often referred to as childrens Alzheimers. The family formed its own organization, Danas Angels Research Trust, to fight the disease. It causes progressive deterioration of the nervous system because of an interference in the body's ability to metabolize cholesterol. It leads to neurological problems that impact the ability to walk, talk and swallow. Typically children diagnosed with the disease rarely live past their early teens. Only 200 cases of Niemann-Pick Type C have been diagnosed in this country, two of whom are the Marella children.
Dana, a 17-year-old senior at Greenwich High School, was diagnosed at age 8. She could not receive a drug trial medication, known as Zavesca, until she was older. She now uses a wheelchair, can no longer speak and requires breathing treatments. Her brother Andrew, an 11-year-old at Central Middle School, was diagnosed at age 5 and started treatment at a younger age. Both children are already beating the odds.
When [Dana] was diagnosed, we watched the steady deterioration. She began leaning on walls, then it was needing a walker and now shes in a wheelchair, said Andrea. Andrew is a little miracle. We do attribute that to medications he was able to start earlier. There isnt total approval of the medication yet, but were working with the drug companies on it.
Dana's Angels Research Trust funds medical research, medical education and medical treatment to find a cure. Whenever you have this situation with a rare disease, fundraising is family foundation oriented, so you dont have larger organizations to rely on, said Phil. Weve luckily been able to use 95 percent of whats raised. The foundation has collected more than $2 million since it started to fund research at five labs around the country.
The Marellas have not given up. We have faith that our two kids will be fine, said Andrea.
On May 20, the trust will hold its Annual Gala Benefit and Concert at the Palace Theatre in Stamford, featuring 60s singing group Frankie Valli and the Four Seasons. The 1960s rock-and-roll-themed event will be hosted by Kathie Lee and Frank Gifford. The Marellas said they have also recruited Regis and Joy Philbin for the silent auction. New York Citys famous Raos Italian restaurant will provide a pasta bar from 6 to 6:45 p.m.
Concert tickets are $45, $75 and $125 and are available online or at the theater box office. Gala tickets start at $300 and include the reception before the concert. Gala tickets are available on Danas Angels website.
Are you familiar with Niemann-Pick Type C disease? Will you be attending the concert and gala? Comment below.
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