Massapequa Burns Rubber to Help Wipe Out ROHHAD Syndrome

Car enthusiasts turned out in droves on Sunday to help a young child afflicted with a rare disease.

The car show at the, run by Long Island Vettes, was organized as a fundraiser for little five year-old Marisa Carney of Bayport.

An adorable child with golden curls and big, wide eyes, Marisa is afflicted with Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Automatic Dysregulation (ROHHAD Syndrome), an extremely rare and incurable disease that causes weight gain as well as breathing and metabolic issues.

Lynette Chin, director of the fundraiser and long-time friend of the Carney family, jumped at the chance to do something to help in their time of need.

"I've known Marisa since she's been born," she said. "When Marisa came down with this disease, I asked Long Island Vettes to help us out and raise some money and awareness for the family, and Long Island Vettes graciously helped out, along with Westfield Mall."

Participants in the car show paid a fee to enter, and dozens of classic and modern muscle cars lined the mall parking lot. Many participants and onlookers also made donations and bought raffles to win items donated by local vendors. All in all, a check was presented to Carney in the amount of $1,500 to help offset some of Marisa's care costs.

Trophies were awarded to various cars, with a special trophy given to a blue-and-white Shelby GT Cobra by Marisa herself, picked as her favorite car of the show.

Danielle Carney, Marisa's mother, spoke about the symptoms of ROHHAD Syndrome, which overtook her daughter seemingly overnight.

"The first thing that happens is the rapid onset of obesity," she said. "Marisa had just turned four, and within a month of her birthday, she had gained double her body weight. I brought her to the doctor, and he said I had been feeding her too much whole milk, which didn't make sense. She had always been a very petite child."

Carney decided to take Marisa to her pediatrician for a second opinion, who looked into the issue in greater depth. The pediatrician discovered a benign tumor, one of the symptoms of ROHHAD Syndrome, that had entrenched itself in her Adrenal gland, which had unfortunately caused the gland to cease functioning.

"But because of that, they backtracked it to ROHHAD," she said. "Thank goodness that they had read articles about ROHHAD and recognized the symptoms."

When Marisa was admitted to the hospital, in addition to her weight gain and tumor, she also had many other issues- her electrolyte balance was thrown off, her sodium levels were affected, and her cholesterol clocked in a nearly 1000. Soon afterwards, her autonomous breathing functions began to be impaired by the disease, eventually leading to Maria's need to be on a ventilator 24 hours a day, in addition to the care of a professional nurse.

An extremely rare disorder, there are approximately 75 cases of ROHHAD documented worldwide. However, Carney believes that small number is actually misleading.

"We believe this disease is much more prevalent than the documented cases because I don't believe that doctors know how to diagnose this," she said. "They assume that these kids are just eating too much, and they have Attention Deficit Disorder, or asthma, and these kids could lose oxygen and get brain damage or die. Marisa's one of the lucky ones."

"And of course there's only 75 documented cases...because many of them die," Carney added. "There are no adult ROHHAD patients."

Carney claims, sadly, that due to the rarity of ROHHAD Syndrome, it's nearly impossible to get funding for research to find a cure.

"They say it's only affecting a small handful of kids, but if you see one child drowning, you're not going to save that kid?" she said. "That's why we're trying to raise awareness and get the word out about this."

To find out how you can help Marisa, or just to find out more about ROHHAD Syndrome, visit the Facebook page of ROHHAD Fight Inc.