“I tell my story because it makes people realize how lucky they are in life, and hug their kids a little bit tighter at night.”
These are the courageous words of Tony Ferrandino, who lost his son, Drew, to Batten Disease in September 2014. He and his wife, Katie, and their sons, Gavin and Drew, had lived a relatively normal life in Pennsylvania until the day Drew turned 3 years old and had his first seizure.
For the next two years, Drew’s condition deteriorated while the family struggled to find a diagnosis. “We tried everything. It’s the dedication that not only we’ve had, but that so many families have had. We will do anything we have to do to help our kids.”
The family traveled across the country for procedures. When Drew started to have trouble seeing, Tony found a top neural ophthalmologist in New York City, Dr. Dabinski. The doctor noticed a familiar change in Drew’s eye, explaining that eye tissue is like brain tissue, and gave the family the best clue as to what was happening. From there, a geneticist diagnosed Drew with Batten Disease, a progressive degenerative neurometabolic disorder that results in deterioration of the brain, neurological function, and other physical impairments.
Leaving one of Drew’s doctor visits, Tony recalls “a huge wind blew and I remember seeing my son’s hair blow in the wind. I looked at my wife and said, ‘You know what? We have to keep fighting and enjoy every day.’ We made the conscious decision to stay positive.”
They took action by joining Batten Disease Support and Research Association, where Tony is a board member, and starting their own nonprofit organization, Drew’s Hope.
Since losing Drew, they try to focus on all they feel fortunate for. Gavin, a baseball pitcher, traces his brother’s initials in the mound every game.
“It’s horrible for this to happen, but it also makes people take a step back,” says Tony. Looking to the future, he wants to continue raising funds and awareness, and making each day as positive as possible.
NORD is honored to tell Tony’s story as part of the 2015 Portraits of Courage celebration.