Christmas for Grand Rapids’ forward Avery Peterson’s family was happy this year.

University of Nebraska-Omaha themed gifts lined their tree in celebration of Avery’s commitment to play for the Mavericks this fall. Avery was in the midst of a now 38-game point streak believed to be the longest currently running in the state, and the senior star is considered among the favorites to win the Mr. Hockey award after opting not to leave high school hockey early to join Sioux City in the United States Hockey League.

He was even picked by the Minnesota Wild in the sixth round of the NHL Draft in June.

But the biggest gift was hope for the future health of his brother Evan, 20, who is battling a rare cognitive and terminal disease called Metachromatic Leukodystrophy (MLD).

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Christmas had a much different tone in the Peterson household last year.  
After noticing changes in Evan’s behavior and cognitive ability before the fall of 2012, Evan’s parents, Linda and Tom, figured Evan had ADHD. As time went on and Evan left for college, however, he had trouble following his schedule, remembering building locations, as well as other issues.

“Things just weren’t adding up for us with the behaviors, and when he left for college he was having some difficulties,” Linda said. “That’s the kind of thing that was really pretty alarming.”

During Thanksgiving break that year, Evan and his family went to the University of Minnesota, where he was sent through a gauntlet of tests. An MRI checked out his brain, and blood samples were shipped to dozens of labs across the country in an attempt to pinpoint what was going wrong.
By Christmas, the pain of the unknown was creeping up on the family, which had originally thought Evan was simply experiencing the trials of being an energetic teenager.

“We’re just a year out from all that, and there are things that Tom and I talk about like, ‘What was Christmas Eve like last year,’ and we can’t remember,” Linda said.

After some additional bloodwork, a diagnosis of late-juvenile-onset MLD was confirmed last January – a disease that affects somewhere between one in 40,000 to one in 500,000 people in most populations.

According to mldfoundation.org, MLD is caused by a genetic defect that reduces the enzyme Arylsulfatase-A. The enzyme usually breaks down sulfatides. When sulfatides build up, they break down the myelin sheath around the body’s nerves, resulting in permanent damage.

“Me and Evan were really good friends, too, when we were younger,” former Grand Rapids defenseman Jake Bischoff, a past teammate of Avery’s, said. 

“It was definitely tough; no one wants to go through that,” said Bischoff, who is now starring at Minnesota. “It was hard on [the Peterson family], lots of treatments, their parents were gone a lot.”

The progression of the disease in late-juvenile-onset patients is slower than in younger people, but eventually it leads to a regression in cognitive, speech, and mobility skills -- with no cure.

“You didn’t know anything, and all you knew was grim, grim, grim,” Linda said of the initial period after the diagnosis. “There was no shining light or evidence of anything but a slow decline or a quick decline. What decline was it gonna be?”

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Fast forward to March, past Grand Rapids’ spirited fight for a birth in the state tournament, where Avery nearly willed his team to St. Paul's Xcel Energy Center with eight points in three section playoff games before losing to Duluth East in the Section 7AA finals.

Doctors at Minnesota called the Petersons about a potential option to help Evan that hadn’t been discussed previously. Just as any hockey-bred family would, the Peterson’s naturally scheduled their visit around the state tournament so they could catch some games while they were in town.

“We conveniently connected that appointment,” Linda said, laughing.

What was supposed to be a one-hour checkup turned into a six-hour appointment where they discussed a risky bone marrow transplant that had a chance to slow the progression of MLD or even halt it in a best-case scenario. Anywhere between five and 10 percent of patients not suffering from cancer who undergo the transplant don’t make it through the procedure alive.

“[Evan] really said he wanted to do it,” Linda said. “The one thing you have to look at is the mortality rate and be willing to accept it. They make it very clear that he may not leave or he may leave in a wheelchair completely incapacitated and bedridden for the rest of his life -- and you have essentially put him there by your decisions.

“Those two things we could handle, but the thing we wouldn’t be able to handle was years down the road as things progressed, as they do when you don’t do anything, we wouldn’t be able to handle, ‘Could we have done something? Is there something we could have done?’ ”

Evan’s sister Annika -- 15 at the time -- was a perfect match to be a donor for the transplant in late April. Like anyone without MLD, Annika’s blood contains the enzyme that those diagnosed with MLD are missing, and the hope is that those enzymes reach Evan’s brain to guard his nerves from being further damaged. 

“It’s not as invasive as you might think, but they took a 2 liter bag of bone marrow from [Annika] and she’s a bitty thing at 5-foot-5,” Linda said. “But to see that bag of marrow being delivered … and then to be transplanted into her brother was a pretty amazing thing. It’s celebrated as the bone marrow transplant birthday kind of thing. We had our family there and our priest from our church there to celebrate with us.”

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Life after the transplant hasn’t been without struggles.

Evan suffered from nausea, mind-numbing fatigue and a weakened immune system that made visiting with people or going out in public difficult. Every day was a new challenge to beat, and passing time was a worthy adversary.
But spirits are high. Evan currently has a job that gets him out of the house for a few hours a day, he is helping coach a Pee Wee hockey team in Grand Rapids and skates with his dad in an old-timer’s league. 

“Rough,” Evan said playfully of coaching Pee Wee hockey. “Sometimes the kids just don’t understand what they need to do, you know?”

All of Evan’s Arylsulfatase-A levels look good at the moment, indicating that the procedure was successful. What that means long term is still unclear. 

“Whether or not we have just slowed the progression or halted it, that remains to be seen,” Linda said. “There’s not a lot of evidence of it halting.

“He’s doing alright physically. We don’t know about the cognitive piece. That’s what we just wait and watch and pray for, that it will be spared – that the damage that has been done will be the only damage done. But we won’t know that for probably three years before we can really say he’s stable, this is where he came in at, and this is where he’s stabilized at.”

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When the school year started this fall, many high school hockey observers around the state assumed Avery would leave Grand Rapids and forgo his senior year. Sure, the Thunderhawks had lost a lot of talent in a player such as Bischoff, and Avery would be playing alongside mostly sophomores, but that didn’t influence his decision.

“Grand Rapids is kind of known for everybody coming back to play,” Avery said. “Alex Goligoski played here and then got drafted and played for Pittsburgh, so it didn’t hurt him too much.

“Leaving early isn’t common in Rapids. I don’t know if I would have been allowed back in the rink.”

The decision has paid off so far. The 6-foot-3, 205-pound forward has 36 points (19 goals, 17 assists) for the 11-3-0 Thunderhawks. That’s an average of over 2.5 points per game for the senior with a cannon of a shot and a knack for scoring important goals. 

Besides citing hockey reasons and wanting to experience life as a senior in high school, the first thing Avery always says is his biggest reason for returning is his family. 

“Me being home obviously gives my mom a little break, sometimes I give [Evan] a ride to his work or something … I’m able to spend time with him too, to give my mom a little break because she spent like four months with him at various hospitals nursing him through everything and so it’s nice that I give her a little break and all that.”

Linda left her job as a first-grade teacher at Grand Rapids after 20 years. She hopes to return once things are a bit more normalized for Evan.

“I think it says a lot about how [Avery] puts family first, he’s a family oriented guy,” Bischoff said. “I think that was pretty cool to spend the year with his family.”

Linda and Evan agreed.

“It means the world,” she said. “It’s what you hope your children would do for anyone in their time of need. We all adore Avery. Evan in particular looks up to his younger brother, he’s a great kid in every way.”

“I think it means a whole lot to us,” Evan said. “I think he’s a great person.”

Benilde-St. Margaret’s coach Ken Pauly got an up-close look of Avery’s skills last winter when, playing outside during arctic conditions on Lake Pokegema, Avery scored two clutch goals to send the Thunderhawks past the Red Knights 3-2 on Hockey Day Minnesota. Pauly has had a good track record of holding on to his star players through their senior seasons, players such as last year's Mr. Hockey and current Wisconsin forward Grant Besse.

“It’s short sighted for everyone involved to have these kids leaving too early,  I think that’s what keeps feeding this thing is the Avery Petersons, and the Bischoffs, and the Besses, and the Johnny Pohls,” Pauly said. “I think at a place like Grand Rapids, I think that’s especially important. To leave a legacy – and I think part of that legacy isn’t just points you score, the titles you win, but kind of what you put back into your high school and your larger community.”

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Hockey intertwines with life in Grand Rapids. It’s one of many great qualities that define the community. But every member of the Peterson family is intent on leaving a legacy beyond the rink. The sacrifices and impacts Evan and his family have made will have a lasting impression on Grand Rapids, and the support from the town will have an impression on the Petersons too.

Through their Faith and their health they find happiness, and pray that Christmas will forever be more like this year, than last.

More information on Evan and MLD can be found at his Caring Bridge website http://www.caringbridge.org/visit/evanpeterson93/mystory or at mldfoundation.org