Teen’s a ‘Ferocious Fighter’

Patrick Boland perseveres, helps others despite ‘suicide disease’

Posted
For eight years, Patrick Boland, 16, has lived with a pain throughout his body that is so excruciating, it can feel as if he’s wrapped in barbed wire, doused in gasoline and set on fire.
 
He has had a headache for the past five years: It’s in his eyes, in his gums, everywhere.
 
He stopped attending school in person in the eighth grade and has had to relearn to walk four times when the constant, unimaginable pain — caused by a rare neurological condition — became too much.
 
But the Highlands Ranch teen never stays down for too long.
 
His passion for baseball gets him out of bed each morning. His treatment regimen propels him through each day. His mom, younger sister and several friends who understand his reality bolster his spirits.
 
And fierce independence and unwavering self-discipline form a bedrock of inner strength and have led him to want to create a community for others in his shoes.
 
Six years ago, Patrick, with his mother’s help, started the nonprofit Ferocious Fighters to connect those dealing with Complex Regional Pain Syndrome or CRPS.
 
“CRPS is known as the suicide disease,” his mother Meg Boland said. “Patrick was really in a bad place and didn’t want other people to feel as alone as he did.”
 
It has taken years of doctors appointments, experimental treatments and grit, but today, Patrick stands strong despite his physical suffering.
 
“I think I handle the pain really well at this point. But it took a really long time,” he said. “The pain doesn’t affect any functionality anymore — even if it’s as high as it can possibly be.”
 
The diagnosis
 
Patrick was 8 when he jumped from a step in his front yard and twisted his left ankle. Four months later, he was still in excruciating pain. His ankle was cold to the touch. It turned purple.
 
“The doctors did an MRI and called me and said, ‘Everything is normal,’” Meg said. “And I said ‘Well, he hasn’t walked in four months.’ ...We went to the first physical therapy visit and within five minutes of being with Patrick, they said ‘This is CRPS.’”
 
CRPS is a neurological condition that causes patients to experience constant nerve pain even after an injury has healed.
 
The illness is shrouded in mystery with very little known about its cause or how to treat it effectively, said Dr. Jeffery Kesten, one of Patrick’s physicians. Experts believe patients with CRPS likely have a genetic predisposition to the disease, but there is virtually always an inciting event, such as a minor injury or surgery.
 
Sometimes, patients will experience swelling, color or temperature changes and nail or hair growth changes. They also often experience allodynia, or severe pain caused by non-painful stimuli, such as — for Patrick — getting into a pool and feeling the wind blow.
 
“He used to describe it as being wrapped in barbed wire, doused in gasoline and set on fire,” said Meg.
 
One pain scale, called the McGill Pain Index, ranks CRPS higher than amputation of a finger without anesthesia and unprepared childbirth.
 
After his initial diagnosis in 2012, Patrick continued to receive more and more diagnoses for other conditions sometimes related to CRPS, including a lacking immune system, weakened cartilage and ligaments, frequent muscle cramps and other issues.
 
He has been in and out of a wheelchair as the nerve pain and other symptoms spread to the rest of his body, as it often does for CRPS patients.
 
About 200,000 people in the U.S. experience the condition every year, according to the National Organization for Rare Disorders.
 
While specialists can offer a variety of treatments, there is no cure. The best CRPS patients can hope for is finding subtle relief, functioning through the pain or, if they’re one of the lucky ones, remission. Patrick has never entered remission, he said.
 
People with a CRPS diagnosis also commonly experience suicidal ideations, Kesten said. That’s why the illness has been dubbed “the suicide disease,” according to the Reflex Sympathetic Dystrophy Sydrome Association, a nonprofit supporting people with CRPS, sometimes known as RSDS.
 
“It must be a horrible place to be,” Kesten said. “I would be concerned if a patient did not have mental health support in a true chronic pain condition because I don’t have a clue how it would not get to you and those around you.”
 
Starting Ferocious Fighters
 
Patrick, deemed a gifted student a few years before his initial injury, was 10 years old when he decided he wanted to help other kids with CRPS by sending them all care packages.
 
But Meg explained that as a teacher at a Douglas County charter school, she couldn’t afford to send every kid with the disease a package.
 
“He said, ‘Well, how does Make-A-Wish do it?’ And I said well, they’re a nonprofit. He said ‘Well, let’s do that,'” she remembers.
 
In 2014, Patrick registered Ferocious Fighters as a 501(c)(3) nonprofit. Six years later, 1,253 kids in 19 countries are linked together through the organization. They range in age from newborns to 21-year-olds and live all over the world, including Africa, Europe, Australia, New Zealand, Costa Rica and Canada. Thirty kids are from Colorado, nearly all living along the Front Range. There are six in Douglas County.
 
That first year, the organization sent 70 care packages. In 2019, the number jumped to 350. So far, the organization has sent more than 1,000 packages total.
 
The packages include a blanket, a Ferocious Fighters T-shirt, a keychain, a hand-crocheted hat, a bumper sticker, a journal and rice hand warmers. All have flames on them to symbolize the burning pain that the kids experience.
 
They also include a hand-written, personalized letter from Patrick.
 
“I’m so sorry that you’re having such a great amount of sensitivity on your left leg,” he wrote in one letter. “I know how hard that can be to deal with.”
 
Each letter ends with his sign-off: “Gentle Hugs, Patrick.”
 
Meg and Patrick decided to start sending out immediate welcome packages before the full care package after they lost a kid on their waiting list to suicide, Meg said.
 
There also are the quarterly encouragement letters and birthday cards. And every November, Ferocious Fighters organizes a virtual walk to encourage the kids to get moving, an important treatment for their disease.
 
“The pain is unbearable,” Meg said. “You have to learn to function anyway because the pain is not going to go away.”
 
The group also organizes dozens of support groups for kids and parents throughout the world.
 
In a note to Meg and Patrick, one mother expressed how much the package meant to her daughter.
 
“She will not be dancing at the dance or marching with the bands, she cannot keep up with friends and has missed out on several school trips and clubs,” read a note from Nina Nation, the mother of a 13-year-old in Nevada. “But tonight, she got a package with her name on it, for her. She smiled. ... She opened the box and cherished everything inside piece by piece.”
 
Patrick has tried dozens of treatments throughout the years, including a host of prescription medications and experimental treatments. He’s been in a hyperbaric oxygen chamber; tried medical marijuana; taken ketamine pills; attempted painful “exposure therapy” sessions, which try to desensitize the patients’ nerves by vigorously rubbing them with a coarse blanket; seen chiropractors and massage therapists and more.
 
After eight years, Patrick has found a cocktail of supplements, medications and treatments that work for him. On top of his daily pills, he receives weekly immune boosters through an IV and, every three months, he undergoes an intense ketamine infusion used to treat chronic pain conditions.
 
One morning in February, Patrick entered Kesten’s infusion clinic wearing a Mac Miller T-shirt, a beanie and sweatpants. At 6 feet 3 inches, he towered over his mother and the infusion director who is administering his treatment. As she prepared the medication, the infusion director asked what pain he was feeling on a scale from one to 10.
 
“It’s at an eight, but that’s only in my back and the rest of the body is a five,” Patrick said. “So really, really good.”
 
His baseline of pain on a daily basis is about a seven out of 10, he said.
 
It’s Patrick’s second day of the infusion therapy and, already, he’s reporting improved comfort. The treatment isn’t without side effects, however. He vomited the night before and on the way into the clinic. In the past, he’s experienced hallucinations, inability to eat, anxiety and memory loss from the treatment.
 
Every baseball day is a good day
 
When asked about what parts of his day-to-day life bring him comfort and joy, Patrick has two answers: medication and baseball.
 
Patrick, who plays a variety of positions including first base and pitcher, wants to play in college with the long-term goal of being on a professional team.
 
Even though his education is online through Colorado Connections Academy, Patrick plays baseball for Mountain Vista High School in Highlands Ranch.
 
“Baseball keeps him alive,” his mom said. “This is his passion, this is what makes him want to get up in the morning. ... Patrick cannot wait for morning workouts that start at 5:45 in the morning. He’s the kid that’s sprinting everywhere.”
 
When he first tried out for the team, Meg was terrified he wouldn’t make it because of his myriad of medical issues, weekly doctor’s appointments and occasional challenges during physical activities.
 
“I’m like ‘Please, please don’t cut my kid’ — because he’s good, he’s really good,’” Meg said.
 
To his coaches, Patrick is just another athlete, said Ron Quintana, Mountain Vista’s head coach. What makes him stand out isn’t his constant battle with his health, but his deep discipline and fervent work ethic, he said.
 
“The other day we were working out and he didn’t have a ride to practice, ... so he ran from home,” Quintana said. “When I ask him to do something, he will sprint to it.”
 
As Meg knows, dealing with this disease as a parent can be devastating. Meg, who is in the process of separating from Patrick’s father, didn’t encourage Patrick to push through the pain before his diagnosis. Like any parent, she just wanted to help make the hurt go away. But once Meg learned what was wrong, her attitude flipped.
 
“If you don’t get up and do it, your muscles will atrophy and you’re stuck in that wheelchair forever,” she said. “CRPS is a move-it or lose-it proposal — I was not willing to let him waste away.”
 
Meg would take Patrick to the pool for aqua therapy while he was in the wheelchair and sit with him as he cried in pain as the water touched him.
 
Today, Patrick still groans at the memories from those sessions, but he understands why his mom pushed him to do it.
 
“When I got out of the pool,” Patrick said, “it would be a lot better.”
 
Over the years, Meg has encouraged other Ferocious Fighter parents to do the same for their kids with CRPS, and as soon as possible: The sooner treatment begins, the better the outcome for the child.
 
“To treat CRPS, you have to go against every instinct you have as a parent,” she said. “You have to make him do his physical therapy even though it hurts him and he’s crying. You have to say ‘Do it anyway.’”
 
Parents like Meg also have to work as an advocate for their child, learning everything they can about the mysterious illness, experimental treatments and possible drug side effects.
 
“We will walk into doctors’ offices and she will start talking and they’ll be like ‘You’re a nurse right? Where did you go to medical school?’” Patrick said. “She’s a really good mom.”
 
As hard as Meg works to help Patrick, there’s only so much that can be done for the rare condition.
 
In February, before his most recent ketamine session, Patrick was experiencing the most intense pain he’s ever endured, he said.
 
But, he said, there’s a bright side.
 
“I’m at my worst right now. And I’m so happy to say that,” Patrick said before the treatment. “I’m still playing baseball, I’m being a normal teenager, I’m still hanging out with friends, suffering through school work, everything.”

Comments

Our Papers

Ad blocker detected

We have noticed you are using an ad blocking plugin in your browser.

The revenue we receive from our advertisers helps make this site possible. We request you whitelist our site.