Epiphany is a big word. We’ve all had them, the aha moment that awakens you to a new truth.
For my friend Jake Burke, his epiphany happened in the middle of a McDonald’s six years ago.
“We were in line and this gentleman ahead of us turns to Jack and says, ‘What’s wrong with your eye?’ But Jack doesn’t answer.”
Jack is Jake’s six year old son.
“So the guy looks at me and asks me what’s wrong with his eye and I say, ‘He’s all set. He’s alright,’ but the man, he wouldn’t let up. ‘He doesn’t look alright. He looks pretty whack. What’s wrong?’”
And that’s when Jake reached into his protective parent backpack and pulled out a convenient lie.
“His brother hit him in the eye.”
Jake’s epiphany happened after he and Jack had gotten their food and sat down. He chokes up remembering his son’s simple, yet devastating question. “Daddy, why did you lie to that man? Why didn’t you tell him I have a tumor?”
“I don’t know,” Jake told his first born.
The truth was that he had been trying to protect the stranger’s feelings. The epiphany was that it was at the expense of his son’s truth, at the expense of his struggle. He promised Jack that day in the McDonald’s he would never do that again.
Jack quickly offered his heartbreaking forgiveness. “It’s okay, Daddy.”
“Old-ish and spry.” Jake laughs when I ask him to describe himself as a then 37 year old first time father.
An Irish son of the Boston suburb of Medford, Massachusetts, he married Elizabeth O’Brien (of course) and when she got pregnant with their first child, they didn’t find out the sex until Jack came into their lives on January 24th, 2005.
Jake describes his foray into fatherhood as ‘Panic at the Disco,’ those whirling dervish years spent trying to get it right and thinking you’re mostly doing it wrong. He laughs, remembering how Jack called milk ‘gunk’ and would chug from his bottle, “Drinking it like a sailor at a bar, tilting his head back to get as much as he could.”
On a visit to Atlanta, before they permanently moved to Milton a year later, two year old Jack got sick. When the doctor at the urgent care took off his shirt, she noticed the brown café au lait spots on his tiny torso.
Jake says the doctor turned to him and said, “Oh, he has Neurofibromatosis.”
Jake and Beth had thought the spots on their son’s body were just intense Irish freckling.
“What did you say?” he asked the doctor.
That’s the moment the only life they’d ever known was quickly yanked away.
That night Jake drank beer and searched online until 3 a.m., an ugly combination that led him to a single conclusion — “Jack might die.”
Within a few weeks, they would get confirmation, that their son had been born with the genetic disorder that affects 1 in 3,000 people.
“We hit the sh*t lottery,” Jake says. “The condition causes tumors to grow anywhere there’s a nerve ending in the body. It can be on your spine, in your brain, anywhere there’s a nerve ending.”
The tumors can become cancerous. They can grow. They can spread. If you try to remove them, they can come back bigger.
Jack has two tumors, one in his brain stem and one near his eye. He has had brain surgery and orbital surgery and a year of chemo. There are the MRI’s that take hours and the treatments that require sedation.
Jake remembers those times as the absolute worst.
“They’d make me have to hold him down. He would look right at me. It was me and these people against him. And he’d say “Please daddy, don’t do that.”
The memory brings more tears.
“That was the hardest thing and it happened a lot.’”
CURE NF WITH JACK
With wisdom that has been brutally earned, Jack has had to contemplate the end of his life.
“When he was ten, we were driving home from an appointment and he said, ‘Am I going to die?’ I said ‘We’re all going to die.’ He said ‘You know what I mean. Am I going to die from NF?’ ‘I don’t know.’ That’s what I said.”
There is no trading places with his son. No amount of prayers or pleading or begging can alter the reality.
But Jake has a mouth. A born talker, he used his now softened Boston accent in the world of sales to get people to buy in. It got him his car and his house and his life and now maybe, that mouth could help save his son and the 2.3 million other people with Neurofibromatosis.
He started the non profit, CureNFwithJack. He networked and planned a golf tournament in Atlanta. Jack Nicklaus’s son, Mike played the tournament with some buddies. He met Jack. He was hooked. He suggested they do a tournament in Palm Beach. Mike went to his dad Jack. The Golden Bear got on board.
Then professional race car driver Ryan Eversley reached out to them. He wanted to help. Then musician Kevin Griffin from the band Better than Ezra. All were willing to leverage their celebrity to raise money.
Jake and Beth had hoped to raise $1 million in ten years. They did $1.3 million in five.
CUPID’S UNDIE RUN
“For $250 dollars, you can sit at the bar all day and drink.” Ever the salesman from Boston, Jake pushes the open-bar-donation deal for Saturday’s Cupid’s Undie Run in Buckhead.
Dozens of Undie Runs are held in 38 cities across the country to benefit the Children’s Tumor Foundation.
CureNFwithJack, now a power player in the world of fundraising and research, has helped sponsor clinical trials that have saved childrens’ lives. Jack’s ten teams will account for 10% of the more $3 million dollars raised from all the races.
Next year, Jack will head to middle school. “He’s your typical wise ass 12 year old.” You can hear the pride in Jake’s voice when he talks about his son, how he manages — to get A’s in school, to be happy, to move forward in a life that is far more difficult than is fair. “He has never once said, ‘Woe is me.’”
Jake worries, not about middle school, but about the rest of Jack’s life. There are tumors living within his son, and he knows every bad thing that can happen.
There is the worry about Jack as an adult – when Jake can no longer shield him from the inevitable, dark parts of life. Jake is counting on Jack’s little brother Luke and sister Grace, to take his and Beth’s place, when they can’t be there anymore.
Like any parent forced to confront their child’s mortality, Jake will never stop – never stop using that mouth, that Boston bravado, that soulful Irish spirit – to save his son.
I’m not sure you’ll find a happier place than the Undie Run this Saturday.
Whether you run the one miler or stop by Big Sky Bar, go find Jake Burke.
He wants to meet you, and raise a toast to his boy.
To donate to Jack’s team, click here.
To run with Jack’s team this Saturday, click here.
To donate to Cure NF with Jack, click here.
To see Jack’s journey, click here.