Full disclosure: This story involves New York Auto Giant (NYAG), one of the five organizations that sponsor the Long Island Press website. Details about their involvement can be viewed here. Every Press “Patron” waives the right to pitch the Press or influence our non-sponsored editorial content. The subject of this article arose from a conversation between the principals of the Press and NYAG. We think you’ll understand why we decided to write it.
Danielle Carney of Bayport calls the people of NY Auto Giant her “angels in heaven.” Ever since the day, four years ago, when co-owner Michael Brown read an article about Carney’s daughter Marisa in a local newspaper, the roads between the Carneys’ journey and NY Auto Giant intersected for good.
Marisa Carney is a bright, energetic 8-year-old girl who suffers from a disease called ROHHAD (Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation), which affects her ability to breathe for extended periods of time off of a respirator. Since she was diagnosed with this rare illness at 4 years old, her parents have been working tirelessly to bring attention to this disease and to help her. ROHHAD affects only 75 people worldwide. Because it is so rare, there is virtually no research or funding to finding treatment or a cure. The life expectancy of people with ROHHAD is just 13 years old. This December, with a generous donation of $100,000 from NYAG, brought a shimmer of hope to what had thus far been a very bleak outcome.
“This is not a charity to us anymore,” said Anthony Fiore, NYAG director of marketing and advertising. “Marisa is like part of our family.”
Since meeting Marisa when he started with the company three years ago, Tony has taken a personal interest in her cause. He stops at her house almost weekly on his way home from work. He even threw her eighth birthday party at the Sayville movie theater, a red carpet event where the children pulled up in limousines, dressed in ball gowns. The event raised $8,000 for Marisa.
“When it comes to kids, man,” Tony said, his voice trailing off as he choked up. “There isn’t enough you could do.”
Marisa is currently being treated at the Ann and Robert H. Lurie Children’s Hospital in Chicago by Dr. Debra Weese-Mayer, who named the disorder and is researching the genetic origins of the disease, which affects the hypothalamus—the part of the brain that regulates functions that are automatic in most people, including the nervous system, the metabolism, her breathing and her temperature. Marisa depends on a ventilator to breathe for all except four to five hours per day. But she doesn’t let that slow her down.
“She mopped up my daughters in this dance game,” said Michael Brown, NY Auto Giant co-owner. “She was holding a ventilator.”
Brown took an active interest in Marisa four years ago, when he came upon a weekend article in Newsday detailing her disease and struggle. Brown has twin daughters who are the same age as Marisa. The story hit home for him.
“I came in and handed one of my general managers the paper and said, ‘Listen. I don’t know what we’re going to do, but you figure something out. I’m not letting this story sit on my desk. We’ve got to do something. This is a real kid. We donate to all these charities. I want to help this kid,’” he told the Press.
Dr. Weese-Meyer is conducting a genetic study with approximately 20 children who suffer from ROHHAD. Both the children and the parents submitted blood samples. Weese-Meyer will study the stem cells of the blood to see if she can isolate any distinguishing abnormality in the children participating in the research. The outcome of the study could provide more information on the disorder and possible connections to obesity and Sudden Infant Death Syndrome (SIDS), a disorder, like ROHHADS, where the lungs suddenly stop automatically pumping, leading to death.
Participation in the study did not come cheap. The Carneys needed $100,000 to be included.
NY Auto Giant donated $25 for every car sold during November 2014. They met and passed their 5,000-car quota and presented Marisa with a check for $103,250 in December.
“They just love our daughter and I’m so happy someone got the point of just—we want to save this girl,” Marisa’s mother Danielle told the Press in a phone interview. “We want to save Marisa. So for us, it’s a blessing that someone took an interest in us and this disease, and especially Marisa, because once you see her—she’s my daughter, but she’s amazing. Her spirit. Her love of life. Her wanting to just be 8. She’s not going to let this disease stop her from being 8. She lights up a room when she’s there. Marisa makes it very easy to want to help her.”
Michael Brown pointed to a framed picture in his office that Marisa painted for him as a thank you this December. “This kid is the most amazing human being I’ve ever seen in my life,” he says.
To learn more about Marisa Carney or about how you can help, visit www.ROHHADFight.org.
