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East Northport boy raises cystic fibrosis funds for cousin he's never met
Alex Caren has already raised $2,100 on behalf of his third cousin’s battle with cystic fibrosis this month, and the 12-year-old hasn’t even met her yet.
As part of his “good deed” project for his bar mitzvah on Nov. 30, Alex is raising funds for the Cystic Fibrosis Foundation in honor of 13-year-old Courtney Starr, of Jacksonville, Fla., who was diagnosed at birth with the chronic disease of the lungs and digestive system.
“I wanted to give back to my family so I thought it would be a good idea to help find a cure for my cousin,” said Alex, of East Northport.
Alex said funds raised at Lazerland in Commack last Sunday will go directly to the Cystic Fibrosis Foundation to help fund further research. From 7:30 to 9:30 p.m., all of Lazerland’s revenue — $1,500 — went to the foundation.
Courtney’s father Steve Starr, 39, has already raised nearly $50,000 for the foundation.
“It’s great that Courtney has such a huge army fighting for her to find a cure,” Starr said. “We’re not only raising awareness in Jacksonville, but also in New York. That’s the key to educating people and funding new drugs to stop the progression of the deadly illness.”
Known as a social butterfly in school, Starr said everyone loves being around his daughter.
“She makes everyone around her smile,” he said. “With a positive attitude, she juggles dancing, cheerleading, sports and battling cystic fibrosis, all with a positive attitude.”
Starr said Courtney’s mother had complications during her pregnancy that triggered the disease. While in the womb, Courtney experienced intestinal blockage, causing swelling.
“Courtney’s mucus is a lot thicker than ours, but the more she stays active the better so it doesn’t clump and lead to bacterial infections,” Starr said. “It’s a life-limiting disease. Courtney takes 50 pills a day, is hospitalized twice a year for two weeks at a time and has to wear a vest twice a day for 30 minutes to loosen up the mucus in her lungs.”
Starr said they’re going to Alex’s bar mitzvah in November. He’s excited for his daughter to meet her cousin — who has already done so much for her — for the first time.
Alex’s mother Sue said though great strides have been made with cystic fibrosis, the average life expectancy is still only 37, so her family wanted to do what they could.
“Our family has gotten so much out of this experience that I don’t think we’ll ever not want to be a part of helping,” Sue Caren said. “It makes you stop and think, ‘How can I help?’”
Three days before his baseball tournament in June, Alex broke his wrist playing kickball. He was devastated he couldn’t play, but Courtney’s condition put things in perspective.
“I was upset, but I learned there’s worse things in life and I should be grateful for my health,” he said. “I’m going to volunteer in Melville [at the local Cystic Fibrosis Foundation chapter].
On Friday, at the dinner table, his mother asked what he wanted to do next year to raise money for the foundation.
He optimistically answered, “Hopefully next year we won’t have to.”
To donate to the foundation, on behalf of Team Courtney, visit www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=8249&idUser=116619.