\u201cI tell my story because it makes people realize how lucky they are in life, and hug their kids a little bit tighter at night.\u201d<\/p>\n
These are the courageous words of Tony Ferrandino, who lost his son, Drew, to Batten Disease in September 2014.\u00a0 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.<\/p>\n
For the next two years, Drew\u2019s condition deteriorated while the family struggled to find a diagnosis. \u00a0\u201cWe tried everything.\u00a0 It\u2019s the dedication that not only we\u2019ve had, but that so many families have had. We will do anything we have to do to help our kids.\u201d<\/p>\n
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\u2019s eye, explaining that eye tissue is like brain tissue, and gave the family the best clue as to what was happening.\u00a0 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.<\/p>\n
Leaving one of Drew\u2019s doctor visits, Tony recalls \u201ca huge wind blew and I remember seeing my son\u2019s hair blow in the wind.\u00a0 I looked at my wife and said, \u2018You know what?\u00a0 We have to keep fighting and enjoy every day.\u2019 \u00a0We made the conscious decision to stay positive.\u201d<\/p>\n
They took action by joining Batten Disease Support and Research Association, where Tony is a board member, and starting their own nonprofit organization, Drew\u2019s Hope.<\/p>\n
Since losing Drew, they try to focus on all they feel fortunate for.\u00a0 Gavin, a baseball pitcher, traces his brother\u2019s initials in the mound every game.<\/p>\n
\u201cIt\u2019s horrible for this to happen, but it also makes people take a step back,\u201d says Tony.\u00a0 Looking to the future, he wants to continue raising funds and awareness, and making each day as positive as possible.<\/p>\n
NORD is honored to tell Tony\u2019s story as part of the 2015 Portraits of Courage celebration.<\/p>\n","protected":false},"excerpt":{"rendered":"
\u201cI tell my story because it makes people realize how lucky they are in life, and hug their kids a little bit tighter at night.\u201d These are the courageous words … <\/p>\n