- Associated Press - Sunday, May 14, 2017

ARLINGTON, Wash. (AP) - Matthew Irish plays third base with Lakewood High School’s Cougars. Noah, his 11-year-old brother, is a second baseman and center fielder on a Stilly Valley Little League Majors team. And older brother Jacob Irish is their greatest fan.

Until now, 16-year-old Jacob hadn’t had a chance to play on a baseball team. This season, he’s sporting a regulation uniform and an official Little League patch. Affected by life-threatening Hurler syndrome since birth, Jacob is playing this season on a Stilly Valley Little League Challenger Division team.

New to Arlington’s Stilly Valley Little League, the Challenger program offers the baseball experience to boys and girls with physical, developmental and intellectual disabilities. It’s been part of Little League nationally since 1989.

“This is a brand new program,” said Melanie Irish, the boys’ mother. “We’ve been hoping for it for years. They love baseball, these boys of mine.”

Jacob, whose family lives near Lake Goodwin north of Marysville, was a baby when he was diagnosed at Seattle Children’s Hospital with Hurler syndrome. Sufferers of the rare genetic disease lack an enzyme that breaks down sugar molecules called glycosaminoglycans. Without that enzyme, the molecules, often found in fluid around joints, build up as dead cells and cause damage.

According to the U.S. National Library of Medicine, affiliated with the National Institutes of Health, symptoms can include abnormal bones in the spine, halted growth, intellectual disability, joint and heart problems, and other issues. In 2002, Melanie Irish told The Herald that when Jacob was diagnosed, “the geneticist told us to take him home and love him. It was horrible.”

Steve and Melanie Irish learned that without treatment, their firstborn’s life expectancy could be just five to 10 years. Against those odds, Jacob is due to turn 17 July 29. He’ll have his first Little League season behind him.

“What’s great, we’ve seen Matthew and Noah come up in Stilly Valley Little League,” said Greg Dunc, the league’s president. Matthew, 15, played in the league before moving on to select baseball and Lakewood High’s JV and varsity teams. “Noah is still in the Majors. It’s such a joy to have Jacob. We’ve had all the Irish boys now,” Dunc said.

The family was featured in this column in 2002. Jacob, then 2, underwent a cord-blood transplant at Duke University Medical Center in Durham, North Carolina. The pioneering treatment for Hurler syndrome replaces DNA in bone marrow and blood.

In the years since, Melanie Irish said, “he has had 36 surgeries, maybe 37,” including multiple spine procedures. “His entire spine has been done, the spine is pretty much titanium,” she said. A year ago, Jacob flew to Los Angeles several times for a clinical trial of medication meant to ease bone and joint pain he experiences daily.

Jacob is a special education student at Lakewood High School, where Melanie Irish works as a career and college counselor. Steve Irish is self-employed.

The oldest son can walk, but also uses an adaptive wheelchair. Melanie Irish said Jacob is developmentally “age 5 or 6, with a limited vocabulary.”

Jacob has a huge love for baseball,” his mom said. “He has been watching his brother Matthew play for 11 years, and Noah has been playing for six years. He loves watching the Mariners on TV, and in person, too. It’s finally Jacob’s turn to play - and the happiness he gets from playing is amazing.”

Superheroes, that’s the name of the Stilly Valley Little League’s first-ever Challenger team. They play at Quake Field at the Arlington Boys & Girls Club.

“Other leagues around us have done it for years. We just felt now is the time,” Dunc said of the team for players with special needs. “For myself and the board, it’s our proudest accomplishment. This is really simple. Every boy and girl should have a chance to play Little League.”

Challenger players range in age from 4 to 18, Dunc said. The 15-player Superheroes team has taken on Challenger teams from Mill Creek and Pacific Little League in Lynnwood. The Superheroes have also played Stilly Valley Little League baseball and girls’ softball teams.

Players may bat with a T-ball stand, or with a coach pitching. No scores are kept. “We have a home-run inning. Every kid hits and runs all the way around,” Dunc said. And after every game, players each get a hot dog at the concession stand.

Melanie Irish said Jacob is excited at every game. “He’s loving things, you can just tell,” she said.

Neither Jacob’s family nor his doctors know his prognosis, she said.

“At this point, it’s day to day,” Melanie Irish said. “He’s playing baseball at almost 17. I can’t ask for anything more.”


Information from: The Daily Herald, https://www.heraldnet.com

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