Junior high football star tackles a rare disease
VIdeo by Steve Myrick
This Saturday, Chris Patnaude, an Edgartown School eighth-grader and two-time team captain of the Martha's Vineyard junior high school football team, will suit up to play halfback and linebacker against Boston College High School. In a brief ceremony before the noon kickoff, Chris will share his remarkable comeback story over a much more formidable foe, a potentially fatal blood disease known as Hypereosinophilic syndrome (HES), a disease that's as hard to diagnose as it is to pronounce.
Five years ago, Chris was in a wheelchair, wondering if he'd ever walk again. Despite the pricking and prodding of countless diagnostic tests, the doctors at Children's Hospital in Boston couldn't figure out why he was in constant pain, sometimes so much that he couldn't be touched. They couldn't figure out why his legs were swollen to twice their normal size, why he had fluid in his lungs that made breathing and swallowing difficult, or why he had skin rashes that burned and migraines that constantly hammered at his skull.
Eventually, Chris was diagnosed with Hypereosinophilic syndrome. According to the Mayo Clinic, "HES refers to a group of blood disorders that occur when you have high numbers of eosinophils — white blood cells that play an important role in your immune system. Over time, these high numbers of eosinophils enter various tissues, causing inflammation and eventually damaging your organs, most commonly targeting the skin, lung, heart, blood and nervous system. Hypereosinophilic syndrome can become life-threatening if not treated."
It's been a long road back for Chris Patnaude. It's hard to believe, watching him bark encouragement at his teammates in the waning light of a Monday afternoon practice, that a few years ago, this hale, gifted athlete with boy band good looks was in Children's Hospital in Boston wondering if he'd ever play sports again.
"The symptoms showed up when he was eight," said Chris's father, Dennis Patnaude. "We thought it was growing pains. For about a year it progressively got worse. We kept going to doctors, no one knew what was going on. That's the issue with the disease because the diagnosis period is so long. A lot of people end up with major organ damage before they come up with the diagnosis."
Despite his worsening symptoms, Chris fought doggedly to play the sports he loved. "He was at a baseball game, about to bat and he didn't look right," said Mr. Patnaude. "I suggested we get a pinch hitter but he refused. He gets walked and eventually ends up on third base. A kid hits the ball and Chris says to me, 'Dad I can't move.' So I picked him up to take him to the hospital, but he said, 'You have to hit home plate, dad.' So we touched home plate and dialed 911. They think he had a mild stroke brought on by congestive heart failure, but all he cared about was the game."
Chris described the low point in his battle with HES. "I couldn't walk because all my muscles and organs were shutting down, and I was in a wheelchair for almost a year," he said. "Some days I would wake up and I just couldn't move because my body just hurt so much. For a long time, they didn't know what it was. A lot of people die of this before they diagnose them. I'm lucky I was diagnosed."
The family moved from Plymouth to Martha's Vineyard when Dennis Patnaude took a job as construction manager for the new Martha's Vineyard Hospital. Chris's mother, Tanya Patnaude, said the family's move to the Island, shortly after Chris was diagnosed with HES, has been crucial to his recovery. "A lot changed when we moved here," she said. "The [Edgartown] school made him feel so comfortable. It's huge for a kid to feel safe and secure. He didn't feel like he was being judged. I think people are more accepting here. Nurse Barlett has been amazing. Doctor Goldfein at the hospital is a great pediatrician and he's become an HES expert."
The decision to let Chris go back to playing football was apparently an easy one. "Once he was on his meds and he was able to manage, we decided as a family to let Chris be Chris and do all the things he loves as long as he could," said Ms. Patnaude. "We need to put our fears and anxiety on the back burner and let Chris do what he loves. Being part of a team means so much to Chris. His football family is a huge source of strength. And they are a family. They do all kinds of things together. Coach Quinn is a very special person."
Coach Steve Quinn said that in 20 years of coaching youth football, he's never seen an athlete like his star linebacker/halfback. "Chris is the most amazing kid I've ever coached," he said. "He runs like an animal, he fights for every single yard. He's intense, he's the tone-setter for everything. When he came here, right off the bat, he was working his butt off, giving max effort all the time. I said to his dad, 'Why does he push himself like that all the time?' His dad said, 'If he stops, he'll die.' And he starts telling me about Chris."
'The most upbeat kid'
"You would never know the kind of pain this kid deals with daily," said Zeke Voight, assistant coach to Mr. Quinn and surgical assistant at Martha's Vineyard Hospital. "He's the most upbeat kid, he lives his life to the fullest every single day. He doesn't sweat the small stuff. After what he's been through, he's an inspiration to everybody."
"And he's a natural leader," said Mr. Quinn. "You can't teach that."
Chris's battle with HES is ongoing, but he's determined not to let it slow him down. "About a year and a half ago he had to go to the hospital because he had inflammation around his lungs," said Mr. Patnaude. "He went into the hospital on Monday, they kept him overnight. Then he ran the St. Patrick's day 5K for the Boys and Girls club that Saturday."
Chris decided to share his experience with HES before Saturday's game as a way to raise awareness of eosinophilic syndrome.
"When he first came, he didn't want to tell anybody about it," said Coach Quinn. "He didn't want to be treated different. But since he's excelling at such a high level, I think it's dawned on him that this is a great way to give back and help people with the disease. This was his idea."
"Some of my friends know about this disease but a lot of Vineyarders don't. It's very rare but more people are getting it, and I'd like to do something to make people aware of it," said Chris.
Real men wear hot pink
As a sign of solidarity, Chris and his teammates will wear hot pink — the color chosen for HES, and coincidentally, Chris's favorite color. "When Chris found out the disease color was pink, he was like, 'yeah!'" said Ms. Patnaude.
"Ask any of my friends, I wear pink socks, I wear a pink suit to school," said Chris with a wide grin.
"He even got a full pink body suit — a green man suit, but pink," said Ms. Patnaude. "We found out just how accepting people are here when he wore it around Edgartown during national [HES] awareness week."
At the end of Monday's practice, Coach Quinn informed his players about the pre-game ceremony being held this Saturday. He told his purple-clad charges that, to show their support for Chris, everyone was going to wear something hot pink. While it may seem a tad incongruous for a burly football coach to tell his team to wear something hot pink on game day, the idea was clearly popular with Chris's cheering teammates. "But not the helmets guys, please, they're way too expensive," said Coach Quinn.