Craig Winter turned 3 in March, but he has gravitated toward fire trucks, police cars, and all kinds of emergency response vehicles since he was old enough to have interests. When the window in his room at the Golisano Children’s Hospital ended up looking out over the emergency room entrance, he got excited every time an ambulance pulled in.
Craig, who lives in Pittsford with his parents, Tim and Kim, and his younger sister, Lillian, was diagnosed with a rare form of cancer last October. On Saturday, August 24, Make-A-Wish Metro New York and Western New York gave him his very own backyard firehouse, and the Pittsford Fire Department was there to make the day extra special.
“It was an incredible day,” said Kim, 35, a second-grade teacher in the Hilton school district who took time off to care for her son. “Even though Craig’s 3, I’m certain he’s going to remember that day for the rest of his life, and we will too. It was something that was so positive.”
Craig was 2 years old when his headaches started.
“A 2-and-a-half-year-old doesn’t say they have a headache,” Kim said. “He was just lethargic, and that was so the opposite of how he was. We just knew that something was really wrong.”
At first he was diagnosed with hydrocephalus, a buildup of fluid in the skull that causes brain swelling. After an operation on his brain failed to solve the problem, scans revealed the toddler had tumors throughout his spine that were forcing fluids back up into his skull.
Craig went through four surgeries over the next two weeks and was in the intensive care unit for 17 days. Doctors told his parents that his cancer was so rare, they couldn’t give an accurate prognosis.
“In a lot of ways that was a huge blessing, because we didn’t dwell on any kind of number,” Kim said. “We just really went by how was he doing.”
Then a hospital social worker told the family Craig qualified for Make-A-Wish.
“It made me absolutely panic,” Kim said. “‘That’s for kids who are going to die.’ That was my initial thought.”
The social worker, noticing Kim’s reaction, clarified that Make-A-Wish is for anyone between ages 2 and a half and 18 with a life-threatening illness, not just those with terminal cases.
The Winters already knew Craig’s cancer was life-threatening. Still, it would be months before Kim read the brochure the social worker gave her.
“Our whole life was flipped upside down,” she said. “It was too much to think about.”
A few months after Craig’s diagnosis, Kim took a second look at the Make-A-Wish website. Once he was nominated and accepted, designated “wish-granters” visited with the family to help determine an appropriate wish for someone so young.
“There’s a lot of behind-the scenes stuff that went on for months,” Kim said. “It was a very very wonderful distraction. It was just something we looked forward to.”
According to Make-A-Wish Media Relations Manager Kate McGowan, that’s part of of the plan.
“These families are just going through so many challenges,” McGowan said. "They're thinking about hospitals and medicine and doctors and needles. To be able to bring them some hope, strength, and joy is really outstanding. It's not something that just impacts them in that moment, it really impacts them for many years to come. We just want to give them a break.”
Craig’s custom firehouse came complete and by request with a washer, dryer, fire pole, and loft. He was involved in the process of making the wish, so he had been looking forward to the reveal for months.
“He knew it was coming,” said Kim, who scheduled Craig’s chemotherapy early on the week of the reveal so he would be full of energy on the big day. “We had made a calendar and we x’ed off the days, so the whole day he was just going bananas.”
Before Craig could climb into his new firehouse, though, he was called to the front yard. The Pittsford Fire Department’s six fire trucks rolled up to his house, lights blazing and sirens wailing, and firefighters gave him firefighter hats and badges to play with.
“It was like a parade,” Kim said. “He was just stunned. It was incredible.”
In the days since the big reveal, Craig, his sister, and the 13 young cousins they have in the area have enjoyed playing in “Craig’s Firehouse.” Kim said that a Make-A-Wish gift like an exciting trip would have been fun, but it also would have been less memorable at Craig’s young age.
“It’s going to be something they’re going to enjoy for a long time, so we really felt good about this wish for him,” she said.
Today, Craig is continuing his 62 weeks of chemotherapy treatments. He goes to the hospital every week and can get sick, tired, or both for a few days after each visit, but for the most part, Kim says, he feels good.
“Right now the prognosis looks really good,” Kim said. “He can maintain a pretty normal lifestyle for a 3-year-old.”
The Winters’ team, meanwhile, raised over $8,000 for the hospital during this year’s Stroll for Strong benefit. Kim said it was the least they could do after all the care they’ve received there.
“We are so fortunate, having an amazing children’s hospital locally,” she said. “I don’t think many people — I know I didn’t — appreciate it until they have some need or you know someone close to you who needs it.”