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Dix Hills has had several home-grown local stars (including musician Ryan Star), long-time residents (Wesley Walker) and politicians (Congressman Steve Israel, Huntington Councilwoman Susan Berland and Legislator Steve Stern).
Candlewood Middle School sixth grader Rafaello Carone, 12, is another name you might also know if you are a Dix Hillian.
His story is an amazing one. Rafaello’s life began to change when he was only 2 years old. His mother, Andrea Carone, said that Rafaello started complaining about leg pain when he was 2. The doctors said it was just growing pains. But after months, when the pain didn’t subside, they sent him for blood work. Before he turned 3, he was diagnosed with high-risk ALL (acute lymphoblastic leukemia).
He began receiving aggressive chemotherapy treatments at Memorial Sloan Kettering Hospital, said his mom, undergoing 36 blood transfusions. To make matters worse, his mom added, he has a rare blood type, A-, CMV-.
By Christmas Day 2003, Rafaello was neutropenic, which meant he had abnormally low white blood cells in his bone marrow.
“His blood count was dangerously low and he needed another blood transfusion,” Andrea said. “He got put in the hospital on Christmas Day and some wonderful person took the time during the holiday season to donate blood and save my son’s life. They gave my son the gift of life and now it is our turn to try and save other people.”
“We were very lucky,” Andrea added, “That Christina was a perfect match for Rafaello for bone marrow. We didn’t need to go that route, but we were very blessed to have that option. Many people aren’t that lucky.”
In fact, when Rafaello was 3, he met a boy in the hospital named Jesse. “Jesse needed a bone marrow transplant,” Rafaello said. “He was going to die and go to heaven. I was scared for him. He told me, ‘I want you to help people like me who need a bone marrow match but can’t find one.’ There are children like Jessse who can’t go outside and can only look out the window. I want to give them hope.”
Unfortunately Jesse didn’t get a bone marrow transfer and died. His mother created Jesse’s Wish (http://www.jessieswish.org/), a foundation to help find bone marrow donors. The Carones—Rafaello, mom Andrea and older sisters Christina, 19, and Angela, 18, have been trying to get people to join the bone marrow registry and also to donate blood (http://www.youtube.com/watch?v=WC5kakHzccc).
Rafaello missed most of preschool, because of his compromised immune system, so he ended up repeating kindergarten, but he has been in remission, ending treatment in 2005. Like many 12-year-old boys, Rafaello enjoys swimming, basketball and playing soccer. He says he wants to grow up to become a police officer, and then a lawyer, and maybe when he’s older, a politician.
“He is an active, normal child,” his mom said. He does get monitored and goes to Sloan Kettering once a year, unless the neuropathy flares up.
Unlike most 12 year olds, he has become a motivational speaker, starting at age 5 by speaking with Senator Chuck Schumer at a press conference in 2005 (http://www.schumer.senate.gov/Newsroom/record.cfm?id=261013&&year=2005&).
Also when he was 5, Make-A-Wish Foundation, Suffolk County, called and Rafaello said his wish was to see a volcano erupting.
“The wish granters were so impressed by his compassion and how well spoken he was at such a young age, that he became a Make-A-Wish Ambassador at age 5,” Andrea said.
He now makes “Wish Art” ornaments and has sold thousands of them for $1 each.
He became a Patient Hero for the Leukemia Society and is a motivational speaker for them. He is also a Build a Bear Huggable Hero and appears in their calendar. He is on big murals in the Port Authority and all over for New York BloodCenter. He was a guest speaker at the American Cancer Society’s Relay for Life. He has helped raise over a million dollars for cancer charities.
He is an Ambassador for Splashes of Hope (http://splashesofhope.org/) and will be at their next fundraiser, a Masquerade Ball on Sunday, October 28th from 4 to 9 p.m. at trendy new Melville restaurant Jewel by Tom Schaudel (http://www.jewelrestaurantli.com/).
According to Rafi, one of the most fun things he got to do because of all of his community service was to announce the starting lineup for the New York Knicks at one of their home games.
“They all stood next to me as I was calling their names,” Rafaello said. “I got to meet my favorite player, Nate Robinson.”
“Rafaello is friendly and outgoing and has helped so many people, especially pediatric cancer patients get through their battle. He wants to make things easier for his friends and make them happy,” Andrea said. “Christina, Angela and I try to give back to the community after all they have done for us. So many people came forward and donated blood and bone marrow when Rafi was so ill. People really went out of their way. The generosity and support in Dix Hills was amazing. I was overwhelmed and humbled.”
Rafi added, “I want to say thank you to everyone who helped save my life. I will do anything I can do to give back to the community.”
And seeing all that he has done in such a short time, we can only imagine what the future holds in store for Rafaello Carone.