What Dana Naughton and Jaime Santini first thought was just a virus in their son became every parent’s worst nightmare — a rare, life-threatening blood disorder. But, with the support of their local Astoria community, the parents have been able to find hope amid their grief.
Six-year-old Gabriel Santini Naughton was diagnosed with hemophagocytic lymphohistiocytosis (HLH), a rare, life-threatening autoimmune blood disorder, in September after going through days of high fevers that started on his first day of school.
Early this year, Gabriel had also been sick but because he got better, his parents thought it was just a virus going around.
After being tested, doctors found that Gabriel had HLH and started him on chemotherapy. His body has been receptive to the treatment; however, doctors are waiting on results to see if the disorder is genetic or environmental.
If the disorder is environmental, then it could continue to be treated with chemotherapy or medication, but if it is genetic, Gabriel would need to receive a bone marrow transplant. Starting this week, doctors will begin to start looking for a match for Gabriel.
“He’s responding well. He’s just been amazing,” Naughton said about Gabriel’s energy through the treatment. “He’s been a trooper. He’s not crying about it, he has just been amazing.”
Before Gabriel’s diagnosis, his mother had given birth to his second sister and was on maternity leave from her job as an attorney for the city’s Administration for Children’s Services. In order to continue to care for Gabriel, Naughton is still on leave. Her husband, who is a professional chef, has also had to hold back from working full time.
“We had this system and it was supposed to work and this happened and it was impossible for us to have jobs, commitment when we have to take care of everyone,” Naughton said.
However, even though these past months have been tough on the family, they have felt an overwhelming support from the community that they have called home since 2001.
“There are times that I’ve wanted to break down and I am walking to the supermarket and I get a smile from a neighbor. It’s made me stronger to be able to take care of my son,” Naughton said. “It’s kept the ability to have some normal with the grief that comes with this.”
According to Naughton, neighbors have gone so far as to bring them food, help babysit and in one case help organize an upcoming fundraiser to help them with medical bills and other expenses.
One of the owners of The Quays, located at 45-02 30th Ave., Dee Flattery, and friends of the family, will be hosting a “Gabriel’s Fight” fundraiser on Sunday, Dec. 7, at noon with live music, a magician and face painting for children.
Naughton says she passes the corner pub on the way to the Astoria Heights Playground, and the owners have watched her children grow up through the years.
“It’s just about love and compassion and seeing a family struggling and helping out, even with the little things. That’s made the biggest difference. Sometimes that’s all you need to take another breath and keep walking,” Naughton said. “We have never felt once that we were in this alone.”
Naughton has been keeping an online blog at posthope.org/gabriels-fight with updates on Gabriel’s treatment and also sharing photos of the family, including Gabriel’s sisters Juliette and Cecilia.
The family hopes that after dealing with the treatment and getting through this together, they can give back to the community that has helped them through the difficult time and also help other families going through the same situation.
“There are children that get through this. All I can do is be optimistic that we will be one of those families, and then we will spend time volunteering and help other families get through this,” Naughton said. “When we are out of this mess we want to give back and help families with the little things.”
To make a donation, visit posthope.org/gabriels-fight.