WASHINGTON TOWNSHIP | Janis Adinolfi is grateful her son will be receiving a portable defibrillator this week -- thanks to the Valparaiso Lions Club.
It could save his life.
Zack Adinolfi is 4-years-old and has Brugada syndrome, a potentially life-threatening heart rhythm disorder. He is too young to have a defibrillator implanted, so he needs a portable one in case he goes into cardiac arrest.
Brugada syndrome, often inherited, is characterized by a specific abnormal heartbeat called a Brugada sign -- detected by an electrocardiogram.
Zack's father, John, 42, has Brugada syndrome and collapsed in 2010. He was resuscitated, but has brain damage and now has a defibrillator pacemaker.
Their oldest son, Evan, 14, has not been affected by the syndrome.
Because of his condition, Zack has to have his AED (automatic external defibrillator) with him at all times, even at school or going to a friend's house.
Janis Adinolfi has to watch when Zack gets sick or has a fever over 100.1 degrees. When that happens, he goes directly to Riley Children's Hospital in Indianapolis and is admitted to cardiac intensive care. Zack can go into A-fib, which can cause him to have a stroke.
Because of his health conditions John Adinolfi had to quit his job as a crane operator. Janis Adinolfi stays home to care for her son and husband.
"Our lives have been totally turned upside down, right after my husband collapsed in 2010," she said. "We went from a very comfortable life with us both working to now trying to get my husband on disability."
Janis Adinolfi tries to keep the faith but knows her son and husband are "basically walking time bombs."
"I just want people to know about Brugada syndrome because so many people have never heard of it and it is not common for people to survive it, but my husband has," she said.
Janis Adinolfi gets frustrated because little is known about Brugada syndrome.
"My son is a smart kid and so full of energy I hate to see this happening," she said.
Once Zack is a teen and his arteries are big enough, he could have the defibrillator pacemaker implanted. But for now he can use the AED that the Lions Club purchased for him.
"I cry a lot and am very frustrated with all this," Janis Adinolfi said. "But what gets me through this is that I still have both John and Zack."