BROCKPORT, NY - Growing up, E.J. Genzano always wanted a younger
So when his parents, Emilio and Jill Genzano, adopted Joey from Omaha, Neb., E.J. was thrilled he'd finally have his little brother. Someone to play sports with and get into mischief the way brothers often do.
But when Joey arrived into the family's home in Guilderland, N.Y. when E.J. was 5 years old, his parents had a warning for E.J.: Something was wrong with Joey, and the family had no idea what was plaguing the child.
Neither did his doctors, until he was 2 ½ years old, when his doctor at Strong Memorial Hospital confirmed the bad news: Joey was suffering from Myotonic Muscular Dystrophy, a rare disease that affects the body's muscles and other vital organs.
Babies such as Joey, who was believed to have been born with the disorder, suffer from a more severe form of the disease. As a result, among the symptoms, Joey lacks tone on his body's muscles, his cheeks sag in on his face and he's unable to speak in complete sentences.
The long-term prognosis for Joey isn't promising. E.J. said the doctors have told him they didn't think Joey would reach his 13th birthday, yet Joey is still fighting, still living, all with a smile on his face.
And Genzano wants to do his share to support his younger brother. After going to a Brockport men's ice hockey home game last year, Genzano witnessed the team's annual 'Saves for a Cure' charity, where any save made by a Brockport goalie raised money for cancer treatment. The cause was started by Todd Sheridan (Edison, NJ), a 2010 graduate and cancer survivor.
After watching the hockey community collect more than $3,400 in proceeds, Genzano decided he could use his kicking skills to spearhead a similar charity to benefit Joey.
Every time Genzano steps onto the field for a field goal or extra point attempt, under his "Kicking for the Cure" efforts, all proceeds will go to raise awareness and money for Muscular Dystrophy research.
Last year, Genzano set the Brockport record for extra points in a season (41) and threatened the Brockport record for scoring performance by a kicker (Genzano scored 53 points, five shy of Steve Milne's record of 58, set in 1993).
While Joey is unable to speak in complete sentences, E.J. has ways of communicating with his younger brother. E.J. will ask Joey how his day is going, and Joey will reply "Good." Regardless of how E.J.'s day is going, he says thinking of the courageous way his younger brother deals with this life-threatening condition inspires him.
"It's definitely tough to not be near Joey. I look up to him a lot in the sense of my kicking abilities," said Genzano, a sophomore in his second year as Brockport's starting place kicker.
"Joey's always the one putting a smile on my face, so whenever I'm having a bad day of kicking, I just picture Joey in the back of my mind with his smile, and I can relax on the field and do my thing."
Along with his parents, Joey attended several of Brockport's games in 2009, and was often in the stands sporting a homemade No. 84 jersey or other Brockport paraphernalia. The family again plans to attend as many Golden Eagles football games as possible this year, starting with Saturday night's season-opener versus St. John Fisher College at 6 p.m. under the lights at Growney Stadium.
Emilio Genzano said Joey's condition is terminal and that most children with MMD don't make it out of their teenage years. While the kicker can be a nerve-wracking, pressure-packed position, Emilio said he's noticed a change in the way E.J. conducts himself before, during and after his kicking attempts.
"Joey has a calming effect on E.J.," Emilio Genzano said. "While E.J. went through a rough freshman year trying to figure out who he is, he always knew Joey was ready to give him a hug regardless of what happened on the field. You look at unconditional love and that's Joey. Joey makes you realize just how precious life is."
Including fundraising efforts in his hometown, E.J., Jill and Emilio have raised more than $500,000 for Muscular Dystrophy research. Their efforts, along with other donors, have worked so far. In years past, Emilio said children suffering from Myotonic Muscular Dystrophy wouldn't accurately be diagnosed, and the disease instead would instead be confused with autism or mental retardation.
Joey was one of the first children diagnosed with Myotonic Muscular Dystrophy in the state, and Emilio said efforts to combat the condition, which is genetic, have come a long way since Joey was first diagnosed. The Genzano family credits the doctors at Strong, especially Dr. Charles A. Thornton, with making "tremendous strides" with MMD research.
Despite being separated by nearly 240 miles, Genzano knows his younger brother's calming spirit and warm smile is always close by. But if Genzano ever needs a reminder of the obstacles facing Joey, he need only look at his right arm, where a tattoo of the word "Spero" sits high atop Genzano's bicep.
The word is Latin for hope, and Genzano said hope has become the motto of those living with MMD.
"I love Joey, he's very important to me, and it's very important to spread awareness. I'd love to see a cure one day for this," said E.J., who is confident the Brockport community will support his fundraising efforts.
"It was a natural fit that I could use the football team and my position to promote this cause, plus it gives me some motivation to kick (the ball) through the uprights and make my kicks."