Rare Blood Disorder Can’t Stop Patnaude

Chris Patnaude’s socks are pink. The laces of his football cleats are pink, the band on his left elbow is pink, and the Under Armor sleeve on his right arm also is pink.

If you examined his white blood cells beneath a microscope, you would also see a fair amount of pink. It’s the color that eosiniphils, the rarest type of white blood cell, turn when stained with laboratory dye. In most people’s bodies, eosiniphils makes up no more than four per cent of all white blood cells, and helps fight infections. But for Chris, 14, who is in eighth grade at the Edgartown School, the eosiniphils are rampant and, as his mother Tanya explained: “They fight against him.”

When Chris was nine years old, he was diagnosed with hypereosinophilic sydrome (HES), a rare disorder that, according to the National Institute of Health, is most prevalent among those aged 20-50. The eosiniphils in his blood had multiplied and spread to other tissues in his body, causing a diagnosis of congestive heart failure when he was just eight. He suffered from stomach pains and headaches and inflammation in his limbs to the point where, for a time, he could not walk.

Chris spent a year of his life in a wheelchair, shuttling back and forth from his Plymouth home (the Patnaudes moved to the Vineyard six years ago) to Boston Children’s Hospital as doctors sought a diagnosis. Between the crippling pain in his body and frequent trips to the hospital, he attended just 12 days of school in his third grade year. HES is diagnosed via exclusion, so a number of other disorders had to be ruled out before a final verdict.

“To not know for that year, I think, was hard on all of us,” Mrs. Patnaude said. Chris has five siblings, and the stress of the unknown disease was challenging for the entire family.

“I would just keep going to doctors, and they would say, we don’t know what this is yet,” Chris said. “I just kept wondering what’s wrong with me, am I going to walk again, play sports?” A lifelong athlete, Chris started playing T-ball as soon as he was old enough, and branched into other sports not long after. He currently plays football, lacrosse and basketball. An inhaler and EpiPen are always nearby, in case he has a flareup during practice. The diagnosis, though it finally put a name to the culprit, did not mean an end to the symptoms; HES is a chronic disease.

These days sports are more than an outlet for restless energy and a chance to be with friends — they’re a way for Chris to manage HES.

“It helps him stay loose and stay in control,” said Chris’s father Dennis Patnaude. “If he stops, what happens is he becomes tight . . . the swelling and the inflammation will all come back.” Even in Chris’s classroom at school, Mr. Patnaude said, teachers know that Chris may get up and walk around the halls if he starts to feel tight.

“He’ll push himself through the pain just because he knows that pushing himself will help with the pain later,” Mr. Patnaude said.

Not that any of this was evident during junior high football practice on a recent Wednesday evening. Chris, who has captained the team for two years, cuts through coverage with ease during offense drills, and works on tackling and blocking with his 37 teammates. He wears number 33, the same number his grandfather wore in high school football. When little brother Zach started playing football in the youth league this year, he picked 33, just like his brother.

On most teams, the kid in the pink socks would be easy to pick out, but on the junior high team about a third of the players are also clad in the color. Laces, socks, sleeves, armbands.

“We already told them don’t wear your [pink] socks to practice, you’ll get them dirty,” junior high coach Steve Quinn said. “But they’re wearing them anyway.”

Tomorrow before the junior high team plays its first home match of the season against Boston College High, Chris will speak about his disease and how he manages it. A few weeks ago, he explained at practice “I was kind of just ready to bring up awareness.” The talk is now part of a broader initiative by the American Partnership for Eosinophilic Disorders to raise awareness about HES. The team coaches and cheerleaders will wear pink, and those in the stands are encouraged to as well.

“People have no idea [this exists,]” Mrs. Patnaude said. “That’s why he wants this out there — the faster you get diagnosed, the faster you can get on with your life.”

“I can finally do sports,” Chris said. “So I just decided to share my story with other kids so that they know that if they have this thing, their life isn’t over.”

“I forget he has a disease,” teammate Tristan Scheller said.

“You can’t tell at first,” said Nick Andrade, who also plays lacrosse with Chris. “I’d say he works as hard or harder than everyone else.”

“He motivates us,” said John Goncalves. “He just keeps going, he never stops.”

Steve Quinn said that in more than 20 years of coaching, he had never had a seventh-grade captain.

“He came up and right off the bat he stood out,” Mr. Quinn said. “He was working hard, and everything was max effort all the time.” When the coaches met to choose a captain for the season, there was a familiar refrain: “Patnaude — but he’s a seventh-grader.”

“If he’s the best guy for the job, put him there,” Mr. Quinn said. “So we did.” Since then, he said, Chris has set the tone for the rest of the team. Like any young player, he makes mistakes often, but Mr. Quinn said he learns from them.

“I give him something to do that he can’t do, and he comes back two, three days later, and I say that looks pretty good,” Mr. Quinn said. “He says ‘I’ve been practicing’ . . . he’s that kid.”

“We’re definitely a strong team, stronger than we were last year,” Nick Andrade said. “You can see it on the field.” In the past several months, they all participated in Relay For Life (Chris donned an outfit made of duct tape and sang karaoke with his teammates) and did a fundraiser 5K race. Movie nights are frequent.

“It’s the closest-knit group of kids I’ve ever had,” Mr. Quinn said.

The junior high squad is 1-1 this year, with five games left to play.

“Last year we kind of gave up a little [during games], but this year we just keep pushing and pushing,” Chris said. He takes his responsibilities as captain seriously, hoping to instill in everyone the spirit of resilience.

“Even though we might lose this game, it’s still not over and we can learn from that.”

– Ivy Ashe (source: vineyardgazette.com)