On the day her baby boy was to die, Judy Kentile asked if she could be the last one to hold him so she could gently rock her second-born son into eternal sleep.
Doctors had warned her it would happen on that night in July 1995.
Evan had been born with a heart that took up 75 percent of his chest cavity – far too large to pump blood normally throughout the body.
After 12 days on a extracorporeal membrane oxygenation (ECMO) unit with no improvement, there was nothing more to be done.
Kentile and her then-husband, Mark, were allowed to pull a bed up to his crib in the intensive care unit and wait for the inevitable. The two had already planned a funeral service, informed extended family, picked out the pin-striped blue one-piece outfit he would be buried in.
But when the sun peeked through the window the next morning, the end still hadn’t come.
Another month later, not only was Evan alive, he had received the first pediatric heart transplant at Women & Children’s Hospital in Buffalo.
“It was a miracle that the heart came right to us from a wonderful family in Lockport,” said Kentile of Clayville. “In their tragedy – them losing their daughter – it was a miracle for us. They provided the heart in conjunction with God.”
Evan, now a lanky 21-year-old with a few fading scars, was back in Buffalo on Wednesday to shoot the starting pistol at the 15th annual Ronald McDonald House of Buffalo 5K. The old Victorian home on West Ferry Street – where the run kicked off – is a residence for Evan and his family whenever they are in Buffalo.
After his transplant surgery, they stayed there for four months through his hospitalization. When he was released, they initially came back every three months for checkups, then every six months, then eventually once a year.
Evan started to miss it so much that once he started going to a hospital in Pittsburgh for treatment, he made sure his family stopped once on the drive up and once on the drive back.
“I just like being here,” Evan said from a couch in the front room, smiling. “Especially the basement. They have toys, video games, a foosball table.”
Judy Kentile said the home is a comfort for her family – a room that’s familiar, a warm shower, a stocked kitchen, houseguests who aren’t strangers.
“It doesn’t just ‘feel’ like home – it is a home,” she said. “It was really our primary home, where our family got together. And the people in the house became like our extended family.”
Executive Director Sally Vincent, who began working at the Ronald McDonald house when Evan was 3, said the organization’s goal is to provide a sense of “normalcy.” She and her colleagues know there’s nothing that can be done about medical results, so their focus is on helping the family.
The 5K is an extension of that, she said. Every year, hundreds of people flood the streets to raise money for their cause, pledging their support to families like the Kentiles.
Having Evan officially begin the 2016 run seemed fitting.
“To be able to come back and help us with an event that helps a lot of other families like his is just amazing,” she said.
Hours before the race was to begin, she said she was overjoyed to have the Kentiles back around. It felt like old times.
When they arrived, Evan and his 10-year-old brother, Johnny Mudge, eagerly headed to the basement as soon as they could. Sprinting down the hallways, gaining speed in each turn, the two raced for the “bubble hockey” game. They chose their side, grabbed the handles and started slapping the puck back and forth.
Every once in a while Evan would remember that he would get to shoot the starting pistol, and would flash a smile.
“That’s pretty awesome!” he said. “I can’t wait.”
A day like this might be a reminder – more than usual – just how miraculous it is that he gets to be here at all.