Joey Holt's knowledge of his rare disease is what’s fueling his fight against it. He promotes awareness every chance he gets, allowing him and his mom to heal.
“The only difference between my disease and cancer, is you haven’t heard of my disease,” Joey Holt said.
Since it’s so unknown and rare, even in the medical field, Joey Holt has made it his mission to tell people about his disease. Because, he said, the more who know about it, the faster they will find a treatment and a cure for it.
“It’s devastating. Why can’t it be me? Let me deal with the pain,” Gina Holt said about finding out what her son’s condition was.
Joey spent four months in a wheelchair, missing school, but still maintaining honor-roll status. From his wheelchair, to crutches, to physical therapy, the then-4 th grader missed 28 days of school.
Northern Kentucky Voice: Joey is 12 years old, and his knowledge of his rare disease is what’s fueling his fight against it.
As a WCPO Insider, find out what Joey is fighting against and what he has to say about it--and why his voice is so important.
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FORT THOMAS, Ky. – What was once a scary and unknown reality is now what makes Joey Holt shout, “I'm five in one million!”
The 12-year-old boy has a unique voice, a precocious mind and a rare condition, Langerhans Cell Histiocytosis .
It’s a long name for such a small boy—but he’s fighting back and he's winning.
Langerhans Cell Histiocytosis (Histio ) is a highly uncommon, five-in-one-million disease in which his white blood cells have attacked his hip bone, gnawing away at it. But that hasn’t stopped the sixth-grader from living, or from telling everyone he meets about it his ailment, bringing, what he calls, much-needed awareness.
While doctors cannot say for sure, his mom Gina Holt said she believes there were early signs of trouble from the moment he was born.
Holt didn’t think she could get pregnant after her daughter was born and then she feared that she wouldn’t be able to carry a baby to full-term.
But after a difficult pregnancy and months of bed rest in 2001, Joey was born five weeks early on Dec. 18.
“At 4 p.m. on the dot,” Joey chimed in.
The nurses held the 6-pound., 15-ounce baby boy up for his mom to catch a glimpse of what she said looked like a “shriveled up little old man.”
“It was the most wonderful moment in the world,” Holt said.
She named him Joey after both of his great-great-grandfathers, but his big sister Andi, who was 2 ½ years old at the time, thought he was named after a baby kangaroo.
From birth, ailment after ailment attacked his tiny body.
He was born with a double ear infection, initially rendering him unable to hear.
And while he endured all the ‘normal kid’ ailments, Holt said, his were always much, much worse than other children.
“He’s always been my sickly one,” Holt said of her son, who did not sleep through the night until he was 10 months old.
Over the next 12 years, growing up in Fort Thomas, Ky., Joey has always been smart and funny.
“Very funny, he’s the entertainer and very creative,” Holt said, recalling that once at his sister’s soccer game, he found trash on the ground and built something artistic from it.
And, she added: “He’s always smiling.”
Until he turned 10.
February 2012: Gray clouds canvas the late-winter sky, dark and dreary. Joey, a lanky blonde tween, begins feeling a deep, throbbing pain at the top of his right leg. It’s excruciating at times and then miraculously dissipates. His mom gives him a few pain relievers, hoping it’s just a pulled muscle and that he can work through it. The more it hurts, the more she fears it’s something much more—much worse.
It hurts when he plays with his dog Scout.
It hurts when he’s sitting playing chess.
It hurts while he plays his favorite video games.
It just plain hurts.
March 2012: Holt glances out the window one spring afternoon—it's cool, but the sun illuminates Joey, who's on his way home from Highlands Middle School. His leg is dragging behind him on the sidewalk, barely making it to their porch steps.
As Joey begins to roll out of bed the following morning, he cannot stand, let alone walk. A boy who loves school, especially science class, is out of commission.
Holt rushes him to to the doctor to attempt to figure out what is wrong. After some blood work, she’s told that it’s “growing pains.” She feels depleted, confused and irate.
“It’s frustrating. I know my kid,” Holt says. And she knows that it isn’t growing pains. It’s a pain deep in his bones that isn’t letting up.
The single mother picks up her cell phone, determined to get an answer for her son who’s in pain every day, and eventually all day.
She calls Joey’s doctor.
She calls again.
She calls every day, until they finally give her a referral to Cincinnati Children’s Hospital.
On crutches, Joey limps into the hospital for his appointment with an orthopedic doctor.
The 12-year-old undergoes an MRI. The doctor tells Holt, it’s probably an infection in his leg.
“Thank God they found something,” she says rejuvenated with hope. “And it’s something fixable.”
Three days later, Gina and Joey are called in by a radiologist named Dr. Johnson.
April 2012: On a bright and breezy spring day, the mother and son duo mosey into Dr. Johnson’s office at Children’s, not knowing what to expect. But then they received, what they determined was, the best news they could hear that day.
“It’s not the Big C,” the doctor reassures them.
Then the questions set in… then what?
Dr. Johnson tells them that he is a Langerhans Cell Histiocytosis expert.
So, what is Langerhans Cell Histiocytosis?
“When you’re told it’s not cancer, it’s like: ‘Thank God! It’s not cancer’!” Holt said.
But that didn't bring Holt comfort for long.
Knowledge would be Holt's best defense against a disease ravaging her son from the inside out.
Holt left the hospital with Joey in tow and raced home. She immediately slapped open her computer to do as much research as she could on the complicated-sounding
Histio is a “cancer-like disease,” she said, where the cells that usually help defend a body against infection multiply so quickly that they trick the body to think it's under attack by infection and damage it rather than protect it.
While Histio can attack a person’s organs, skin and bones, Joey was only suffering the invasion to one part of his body and only his bone. Doctors don't know what causes it and why only 1,200 children are affected annually.
Two days later, they were back at the hospital for a bone graph on his hip, where his ball joint was nearly eroded away, she said.
He spent the next four months in a wheelchair, missed school, but still maintained his honor-roll status.
His aches and pains came and went over the next year, forcing him to miss 15 days of school during the fitth grade. He has missed 10 days this school year, Holt said.
Joey, while still fragile, has an MRI every six months. He also continued to meet with a pain team, nutritionist, oncologist, orthopedic and radiologist each week.
He is currently in remission. And as he ages, the more likely it is that he will stay in remission. The scary part: If it comes back, he may have to be treated with chemotherapy.
Little is known of the rare disease, which Joey is working to change -- hopeful that if more is known the sooner there will be a treatment and cure for it.
“The only difference between my disease and cancer, is you haven’t heard of my disease,” he said.
In January, Joey wrote to the mayor of Fort Thomas, asking her to make a proclamation making Feb. 28, International Rare Disease Day, Histiocytosis Day in Fort Thomas.
The mayor agreed and the proclamation was made at the Feb. 18 council meeting.
“Awareness is key. We’re never going to find a cure if no one knows anything about it,” Holt said.
That’s why she created a blog , amplifying her son’s voice, speaking out and educating others about his disease, calling themselves, “Team Super Joey”.
“I want to find a cure for other people so they don’t have to go through what I did,” Joey said.
READ THEIR BLOG
Northern Kentucky Voice: Your Voice, Your Story is a periodic and ongoing series on WCPO.com about the people of Northern Kentucky making a difference in their community.
For more stories by Jessica Noll, go to www.wcpo.com/noll . Follow her on Twitter @JessicaWCPO.