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Clarion boy educates others about juvenile arthritis
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Gary Matus, 7, of Clarion, has juvenile arthritis, but until last year had never met any other child with the condition.
This year he is a poster boy for awareness and works to education the public about the other 11,000 children in this state with juvenile arthritis.
For his sixth birthday last year, Gary asked friends, family and classmates for donations to an arthritis walk team, recalled his mother Rachael Matus.
He raised $350 and started the ball rolling to learn more about the juvenile arthritis community. Recently he was named the youth honoree at this year's "Let's Move Together" walk set for 10 am. Sept. 8 at Mammoth Park in Mount Pleasant Township in Westmoreland County.
His family now comes to Pittsburgh and its suburbs for arthritis foundation activities because it is the closest chapter -- about an hour-and-a-half drive -- to their Clarion home. The Arthritis Foundation of Western Pennsylvania Great Lakes Region serves 19 counties in Western Pennsylvania, including Allegheny and Westmoreland. The foundation said that about 300,000 children in the United States suffer from juvenile arthritis.
Rachael and Joe Matus noticed that when their son was about 2 he wasn't walking a lot. "He complained of having 'hot balls' in his legs," Mrs. Matus recalled.
He was diagnosed not long after and now Mrs. Matus said her son's condition is "very controlled" as long as he takes medicine and stays active.
She said that when he is between sports seasons, he has more flare-ups.
"We all swim as much as we can because he's better off when he's moving," she said.
She also noted that sleep is very important because JA is an autoimmune disease.
"There is a delicate balance between the need for activity and rest,'' she said.
The family, including ''Gary's extremely suppportive advocate sister" -- Amanda, 11 -- attended a juvenile arthritis convention in St. Louis this year
And, despite his condition, Gary is active in sports and has some lofty ambitions.
"He wants to go to Penn State to play football and then play for the Steelers . He wants to be the next James Harrison and open a rib restaurant," Mrs. Matus said.
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Ed Kachurik of New Kensington, who is a noted glass sculptor, is the adult honoree for the walk this year.
Mr. Kachurik suffers from acute osteoarthritis and psoriatic arthritis, which affects his entire body especially his fingers, hands, shoulders, knees and spine. He was diagnosed in the early 1990s.
He started out using medications to control the pain and swelling; today he is active and exercises, eats healthy, receives acupuncture treatments and visits his rheumatologist regularly.
"I'm extremely honored to be the adult honoree for the walk," Mr. Kachurik said. "Until you have a disease or disorder, you aren't always aware of what's going. It's shocking to find out the number people suffering from arthritis: one in five adults in the United States.''
Regionally, the number is even higher, according to Kristina DeVito, community development manager for the foundation. In Pennsylvania, one in three adults has arthritis.
"What's great about this walk is the amount of money directed to the research side of it. I believe that is the only way to cure something is through research," Mr. Kachurik said.
He perseveres through the pain each day to do what he loves. For nearly two decades he has created handmade glass in his own studio, Kachurik Glass Art in New Kensington, which he runs with his wife, Carol.
Pieces of his work can be found in collections at the Cincinnati Art Museum, the Sandwich Glass Museum in Sandwich, Mass., The Corning Museum of Glass in Corning, N.Y. and the Sen. John Heinz History Center. He has made sculptures presented by The Jerome Bettis Foundation annually. In May of this year he donated sculptures to the family of Patrolman Derek Kotecki of Lower Burrell who was killed in the line of duty in October 2011.
"I truly love what I do. I try to be unique," said Mr. Kachurik, who uses a technique of treating the hot glass surface called "veiling." The color is trapped inside the glass when a metallic coating is applied to the molten glass and then covered with clear glass.
"Ed is truly an example of artistry conquering debilitating pain," Ms. DeVito said.
"Let's Move Together" walkers can choose from a 3.1-mile or one-mile walk around Mammoth Park. Proceeds from the event support arthritis research, programs and information for people with arthritis and for their caregivers. To register for the walk, visit www.fallwalk.kintera.org or call 412-250-3342.
For more on the foundation visit www.artrhitis.org.
First Published August 9, 2012 5:01 am
