By ANTHONY BOTTAN
On Friday night, a benefit was held at the Vulcan Firehouse to raise money for the family of a five-year-old Lynbrook boy who suffers from a severe case of hemophilia. More than 100 Lynbrook residents attended the charity event, and the benefit raised more than $7,000.
Danny and Kelly Ambrosio welcomed their first son, Christopher, into the world on May 18, 2004. The day after he was born, Kelly said, Chris became pale and suffered bleeding between his skull and scalp. After several tests, doctors determined that Chris had hemophilia - a rare bleeding disorder where the body cannot clot properly - and he remained in the neonatal intensive care unit at North Shore Hospital in Manhasset for a month. "After Chris got out, he was pretty much confined to his high chair or playpen," Danny said. "We couldn't give him too much freedom."
When he was a year old, doctors determined that Chris's body had developed inhibitors, meaning his body was fighting the medicine needed to help his blood clot properly. "So as we hit another bump in the road, we were faced with more fear and worry for a very active toddler learning to crawl and walk, striving to be like every other child," Kelly said.
At 15 months old, Chris had a seizure and doctors found he had spontaneous bleeding in his brain. He spent another month in the ICU and Danny was unsure if the medicine doctors prescribed Chris would still work. "We didn't know what would work. It was a trying time," he said. "They gave him another medicine and all I could think was 'What's going to happen if this doesn't work?'"
Luckily, Chris's body responded well to the new medication and doctors placed a mediport - a device that is surgically implanted in the chest or arm to accept medication - into Chris' chest so he could have daily injections without using needles.
Chris recovered and he receives injections several times a day. Because his body had formed inhibitors to the medicine, he has to take a dosage equivalent to the amount a 160 pound man would use for the same disease. "He gets a grown man's dose every morning to overcome his disease," Danny said.
His father added that Chris can play some sports - he loves soccer - but he has to hold back. He can't play any contact sports, he added, but Chris now understands his condition. "We give him some freedom now because he can tell us if he's hurt," Danny said. "He does get down about it. Our friends have a trampoline and we can't let him on it, but for the most part, he's great."
Kelly added that through her son's struggles, it gives their family strength. "He's our hero," she said. "I have learned not to sweat the small stuff. There are more important things to worry about. Laugh when you want to cry and always be thankful for what you have."
Danny and Kelly were born and raised in Lynbrook. They have a younger son, Connor, 3 and are expecting their first daughter in October. The Ambrosio's thank Keith and Rebecca Festa, and Peter and Jenny Ledwith for putting Friday's fundraiser together.
The 4th Annual Hemophilia Walk takes place on July 12 at Riverside Park in New York City. To get involved, go to www.hemophilia.org/walk. The Ambrosio's team for the walk is listed under "Christopher's Crew."
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