9-year-old with neurodegenerative disorder creates inseparable bond with Illinois soccer team

9-year-old with neurodegenerative disorder creates inseparable bond with Illinois soccer team

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9-year-old with neurodegenerative disorder creates inseparable bond with Illinois soccer team

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Atlas with goalie Drew Sezonov. (Photo: Scott Atlas)

Matthew Atlas with goalie Drew Sezonov. (Photo: Scott Atlas)

An 8-year-old Matthew Atlas sat in his black and red wheelchair, donning a maroon Wheaton Academy tee with a long-sleeve white shirt underneath. Red lower-leg casts that aided his leg and ankle strength prevented grey sweatpants from drooping all the way to the black braces protecting his feet and achilles. Brown hair extended halfway down his forehead, black glasses rested on his nose and a wide grin took over his face.

As Wheaton boys soccer head coach Jeff Brooke walked through the Chicago-area Portillo’s restaurant amid chaos, Atlas swiveled in his wheelchair at the end of his table just enough for Brooke to catch a glimpse of the smile. He wore 10 medals around his neck, Brooke estimated, and was at the center of Wheaton’s Illinois 2A state title postgame celebration even though he’s not related to anyone on the team.

Atlas has a neurodegenerative disorder that doctors haven’t been able to specifically diagnose. His motor skills and cognitive abilities are adversely affected and most of his time is spent in a wheelchair. If Atlas’ condition affects systems such as his heart and kidney, he’ll live until his teenage years, his mother Becky says. If not, his health will continue to decline, but he’ll live into his 30s or 40s.

Last October, Atlas was introduced to the Wheaton Academy (West Chicago, Ill.) boys soccer team at the suggestion of goalie Drew Sezonov’s mom, Jenn, who works with Becky. For the rest of the fall season, Atlas attended the games he could – he was unable to go to night games because his condition requires extra sleep – and even watched Drew and forward Ty Seager play games for their club teams in the offseason. He’s developed a bond with the team that’s given it something bigger than just medals to play for, and one that has the now 9-year-old eager for the 2015 season.

“I like to see how many goals they can score,” he says.

‘Basically the little boy we know now will continue to disappear’

Atlas was diagnosed with seizures when he was 13 months old and started experiencing a loss of functioning when he was 6 1/2. Doctors didn’t know why. It started with motor loss and fatigue, and Atlas couldn’t muster the energy to walk to the end of his block.

In less than the year that followed, Atlas’ cognitive abilities started declining. Doctors didn’t think it was from seizures, but still didn’t know the exact cause.

His parents brought him to the Cleveland Clinic for genetic testing, and they were directed to Duke University where a muscle biopsy eventually returned abnormal results. Doctors still couldn’t pinpoint anything and after the diagnosis of a neurodegenerative disorder following a return to Cleveland, doctors presented the two possible paths.

“Basically the little boy we know now will continue to disappear,” Becky said. “We just take it one day at a time and we enjoy what we have with him.”

Atlas’ school days mirror that of others his age in some ways – he goes to school, does homework and watches TV if he doesn’t have any – but his medication routine, potential seizure triggers and need for excessive sleep hinder his ability to stay active.

Some summer days consist of resting and sticking to TV and board games inside. Others, he visits the zoo and goes mini-golfing, when he’s able to get out of his wheelchair and hit the ball. Every day is different, his father Scott says, and just like his wife, the approach is the same.

“Just kind of one day at a time,” he says.

‘Matthew will know, he remembers everything.’

Atlas sat in his wheelchair next to Sezonov’s daughter, Anna Ruth, trying to digest his first game as Wheaton Academy took on Wheaton Warrenville South High School. He learned the players’ roles, numbers and names, and nuances such as why players left the field then came back on.

After a 5-0 Wheaton Academy victory, Atlas was rolled onto the field and given a team T-shirt. From there, he was hooked.

He incessantly asked when the next game was. On nights of games he couldn’t attend, Sezonov texted Becky updates and Atlas woke up in the middle of the night, asking if they won. After pleading for a roster, he memorized every name, number and position. Becky even kept every newspaper clipping relating to the team in her file cabinet.

Matthew Atlas with Drew Sezonov (left) and Seager. (Photo: Scott Atlas)

Atlas with Sezonov and Seager. (Photo: Scott Atlas)

She doesn’t remember the month when Drew and a couple of teammates used an off day to visit Atlas at school, so she calls on help. “Matthew will know, he knows everything.” And sure enough, he clarifies it happened in October.

Atlas is restricted at recess. He’s allowed to go outside but not allowed to run. That’s why other kids his age don’t play with him, Becky says. So when a couple of high school boys came to Whittier Elementary School’s lunch and recess to give him a McDonald’s happy meal and play soccer, he was swarmed.

“It was very special to me and I felt really good when that happened,” Atlas said. “Almost everybody at recess wanted to play.”

The day of Wheaton’s 11 a.m. state semifinal game, Atlas didn’t want to go to school. He missed the previous game because it was at night, so Scott met him at the front office for an early pick-up, not telling his son or the school where they were going. Atlas thought something was wrong and suspected another trip to the Cleveland Clinic. But when he found out, he cried tears of joy.

Wheaton won in the semifinals and nine months later, without hesitation, Atlas can reel off that Seager tallied a hat trick in the game. The championship was at 1 o’clock on a Saturday, so Atlas was able to go without missing school. Beforehand, he colored little pieces of paper to put in players’ lockers as momentos for good luck.

“They weren’t winning it for themselves anymore,” Jenn Sezonov says. “They were doing it for something bigger.”

In the finals, Wheaton ran away with a 5-1 victory. Brooke was doused with Gatorade, occupied by interviews and the players celebrated with fans. But then, the attention gravitated toward a boy sitting in a wheelchair on the sideline, braving the cold with a black jacket, winter hat and grey gloves.

A medal was draped around his neck and he became the center of a photo shoot.

“It was awesome to play together,” Seager said. “…but then also have that reason to win, and kind of win for Matthew…and to kind of show him that like yeah, you were a part of the team and you helped us.”

Matthew Atlas with members of the Wheaton Academy soccer team at their postgame celebration. (Photo: Scott Atlas)

Atlas with members of the Wheaton Academy soccer team at their postgame celebration. (Photo: Scott Atlas)

‘I’m trying to learn so I can try and beat them’

The Atlas’ have a tape of the state final and Matthew watches it once a month, Becky says. He’s memorized the plays and knows the goal-scorers. He even sets the video to slow motion, pausing before scoring plays so he can correctly predict what’s going to happen.

With offseason club games included, Sezonov estimates that Atlas has attended 10 or 11 games that her son or Seager have played.

They haven’t lost a single one.

With an already perfect record to his name, Atlas confidently picks Wheaton to win another state title because Seager, the team’s top scorer, is returning. He’s already asked his mother if he can go to games again. He questions who’ll take Drew’s spot as the starting goalie now that he’s graduated. He once again presses for a roster to examine the new crop of players.

He even acknowledges his own progress with the game, humbly saying, “I’m trying to learn so I can beat them.”

And when a group from the team gets together on July 31, Atlas will be in attendance. He’ll be bearing another keepsake he’s already begun crafting and in recent preparation, he stopped and looked at his mother.

“I love them mommy,” he told her, “I love these boys.”

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