ROHADD Fundraiser Held at JWY

The 's girls basketball team in the Bayport-Blue Point School District recently participated in a fundraising basketball game against the girls of Sayville.

The team’s goal was to raise money and awareness for Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation (ROHHAD).   

This cause is near and dear to the hearts of the team and their coach, Richard Campisi, a physical education teacher at whose kindergarten student Marisa Carney was diagnosed with ROHHAD in June 2010.

“This is a good cause,” said Abigail Auwaerter, a seventh-grade member of the basketball team. “We want her to have a good time at the game and realize that we are all here to support her.”

The disease is very rare, affecting roughly 75 people around the world. According to the ROHHAD website, there is no treatment or cure and the source of the illness remains unknown. Symptoms generally start within the first two to four years of life in the form of rapid-onset obesity. From that point, those diagnosed experience impairment to the nervous system and reduced lung functioning that leaves most ROHHAD patients unable to breathe without the use of a ventilator.
 
Marisa was honored by the girls on the team from the moment she arrived at the game. They presented her with a game shirt, a pair of hot pink shoelaces (like those worn by the team), a game ball signed by all of the Phantom players, and a personalized lacrosse stick from Lacrosse Unlimited.  

“I can’t say enough good things about the people of this community,” said Danielle Carney, Marissa’s mother. “Or the amazing administration, teachers and students of the District who, having only just gotten to know my daughter, have gone above and beyond to support her special needs while at the same time making her feel like a typical kid in school.”

Despite the loss to Sayville, the day was a tremendous success. Attendees enjoyed the game as well as the Chinese auction and bake sale that accompanied it. All proceeds were donated to Marisa’s parents to alleviate some of the financial burden from the increasing medical expenses. For more information on ROHHAD and how you can show your support, visit www.rohhadfight.org.

Article and photos courtesy of Alison DeMaria