Three Firefighters Help Bring Attention to Hemophilia
(L to R) FF Bill Patsakos, Aiden Patsakos, Jake Patsakos, Seth Patsakos, Peter McElhinney, Capt. Thomas McElhinney, FF Daniel Ambrosio and Christopher Ambrosio (inset).
Finding out your child suffers from hemophilia, a genetic bleeding disorder that prevents the blood from clotting normally, is overwhelming. The condition can cause uncontrolled, sometimes spontaneous bleeding; the cost of medication is high; and the rarity of the disorder can make a parent feel isolated.
But three FDNY firefighters, who all have children with the condition, are working hard to raise money for the Hemophilia Walk on June 3, to fund research and ensure other families have a support system in place from the moment of diagnosis.
“You don’t want to let your kid out of a bubble when he is diagnosed, so just talking to other parents is a great help,” Firefighter Daniel Ambrosio, Engine 65, said.
His oldest son, Christopher, 8, was diagnosed in 2004. When he and his wife, Kelly, heard the diagnosis, he said, “we didn’t know what it was, we had no family history.”
After they did some research, Ms. Ambrosio, who is a nurse, called the hospital and spoke with someone about her concerns regarding the cord blood she donated after Christopher’s birth. The woman with whom she spoke happened to also have a young son with the disease.
The two women talked and shared stories about their experiences. Soon after, they decided to start a chapter of the National Hemophilia Foundation in New York (there are about 1,000 people in New York State with the condition).
Then, in 2006, they started the Walk. The Foundation thought it was such a good idea they launched walks in chapters throughout the United States – now 23 in total – raising hundreds of thousands of dollars for the charity.
Treatment for the condition is complicated. Each person has different levels of severity and different needs.
Christopher’s case is severe and he also has blood inhibitors that fight off the medications. Thus, he receives a dose of medicine meant for a 160 lbs. man every morning through a Mediport in his chest.
Depending on the individual’s severity, drugs used to treat the condition can cost tens of thousands to millions of dollars per year, so the Foundation also helps support families struggling financially. Firefighter Ambrosio said he also lobbies in Albany for other families whose healthcare does not cover the costs.
Questions involving treatment are what brought Capt. Thomas McElhinney, Div. 13, to meet Firefighter Ambrosio.
The Captain’s son, Peter, was diagnosed in 2010, when he was a year old.
“It was so shocking,” he said. “We were so lucky we found out when we did, before anything serious could have happened.”
His sister started doing research and signed them up for various information and support groups.
Ms. Ambrosio was one of the first people to respond to his sister’s requests for information. She told the family about treatment, support and ways the Foundation could help. She also recruited them to take part in the Walk.
The family got involved and are now are raising money for their second year. All the while, Capt. McElhinney said, he is thinking about his son, who receives medication every other day either from his wife or a nurse.
The boys playing in Brooklyn Bridge Park.
“Our goal is to help make medications better and someday find a cure,” he said. “I know the cure won’t come tomorrow, but someday.”
Firefighter Bill Patsakos, Ladder 80, recently got in touch with Captain McElhinney through his firehouse Lieutenant. Firefighter Patsakos was already quite knowledgeable about the condition and treatment for two reasons – he is a Doctor of Pharmacy and he has three sons (ranging in age from 6 to 10 years) with hemophilia.
“There are a lot of emotional battles you face with this condition,” he said. “I wanted to deal with it on my own, keep it a secret. I didn’t want to be the needy guy in the firehouse.”
But, he added, when he recently learned about the foundation, he realized how much it would have helped him, his wife and his sons Aiden, Jake and Seth. So he signed up for the Walk not only to support other families, but also to raise awareness for the rare condition.
His team is named after his father-in-law, who had the condition and whose birthday was June 3.
All three men said they want to make sure, more than anything, that they give their children freedom to be kids.
“If you handicap a child’s mind it’s worse than a physical handicap,” Firefighter Patsakos said. “You take your doctor’s orders and you push your child’s limits.”
Learn more about the National Hemophilia Foundation and ways you can help families like these.