Jack Lacey died in his dad’s arms Monday.
When the blond, blue-eyed boy’s smile went adorably “lopsided” in early 2019, his parents thought he was just copying someone else’s grin. Instead, it was a missed early warning sign of a deadly tumor.
“We are in hell. We can’t actually believe he’s gone,” Jack’s dad, Wesley Lacey, told Mercury Press. “The message I would give to other parents is to get their kids checked for everything, no matter how small it seems.”
Lacey, 29, and Rebecca Oldham, 30, of Sheffield, England, were concerned when Jack developed a nervous blink and night terrors. Three weeks later, Jack was walking with his hands in front of him to feel his way around.
After a CT scan at Sheffield Children’s NHS Foundation Trust, doctors confirmed Jack had a terminal brain cancer called diffuse pontine glioma (DPG). Less than 10% of children diagnosed with the incurable disease survive two years, according to experts at St. Jude Children’s Research Hospital.
A year after his devastating diagnosis, brave Jack passed away at home. His mom and dad are now sharing Jack’s heart-wrenching story to urge other parents to never take their families for granted.
Jack’s parents were stunned to discover his tumor was inoperable since it was growing in an integral part of his brain. Being blindsided by DPG is the norm: symptoms typically appear suddenly and intensify quickly, said Zhiping Zhou, a neurologist at NYC’s Weill Cornell Brain and Spine Center.
Over the next 11 months, Jack battled through aggressive radiation and chemotherapy at Weston Park Hospital in Sheffield in a desperate attempt to shrink the growing tumor.
As hope ran out, Lacey, a high school-teacher, and hospital-cleaner Oldham steeled themselves to put their lives on hold — and give Jack the “best life possible.”
They set up a GoFundMe campaign seeking donations to fulfill his bucket list. The page went viral around the globe, and messages and donations exceeding $54,000 have poured in from the US, Philippines, South America, Poland, Australia and New Zealand.
Lacey and Oldham took a year off from work so Jack could make the most of his final months with little sister Lottie.
“This last year we have lived a crazy life. It has been a life without limits,” Lacey said. “Jack has done more in the last 11 months than most adults do in their entire lives. If there was anything he wanted in life, he got it.”
Using crowdsourced cash, Jack’s parents booked helicopter and airplane rides, a home visit from the Hells Angels bikers, and trips to Peppa Pig World and Disneyland Paris in May, to London in November and Gran Canaria, Spain, in January, as well as stops in Portugal, Greece and Wales.
The heartbroken parents say it’s now time to thank the generous benefactors who made Jake’s adrenaline-charged bucket list a reality.
“It would have cost us a fortune to do this. There’s no way we could have done any of it without these donations — my wage only just covers the bills we have to pay in everyday life,” Lacey said. “You think that you have seen all of the ugly in the world, watching the news and feeling like the world is empty of love. But when something truly awful happens, people come out of the woodwork that you never would have expected.”
“But I’m going to remember his smile, his interest in absolutely everything, his tenacity and strength of willpower, which was just mind-boggling,” he said. “Even at death’s door, he was still wanting to play and was pretending to steal our noses, but he was so weak he couldn’t lift his arms to put them back.”
Jack died Monday surrounded by his dad, mom and sister while looking at photographs of all his adventures over the past year.
His body has been transferred to a room at Bluebell Wood Children’s Hospice in Sheffield, while Lacey and Oldham say their goodbyes over the next week, organize his funeral and decide how to use the remaining donations in their son’s honor.
“I never thought this would happen to us — the odds of winning the lottery were higher than getting this brain tumor,” Lacey said. “Our message is — don’t get complacent with their lives and just expect your family to be around.”
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