Rock for Life to benefit teen with rare condition
ISELIN — A family in need can find help from several different places. Some families find strength in other families, friends, the church or a charitable organization.
Some find strength in 17 different bands rocking out over two days.
The 14th annual Rock for Life charity show is slated to play the Iselin Ball Field in Saltsburg on Friday and Saturday. This year’s recipient of support is Alicia Hruby, 14, of Monongahela, who has been battling a rare condition.
Alicia was a very active, fit young girl, according to her mother, Donna Hruby. A gymnast, dancer and cheerleader, she was always moving. In the fall of 2011, Alicia developed a persistent, unexplained cough. Trips to the pediatrician revealed nothing wrong, but Donna Hruby still wasn’t convinced.
She took her daughter to a second pediatrician who discovered trouble with her spleen. After blood and imaging tests, he confirmed the Hrubys were in for a long fight with liver disease.
“Her liver was completely cirrhotic, so they said eventually she would need a liver transplant,” she said.
Alicia was ultimately diagnosed with several diseases, including biliary cirrhosis, primary sclerosing cholangitis and auto immune hepatitis.
Biliary cirrhosis occurs when the bile ducts of the liver become inflamed, blocking the flow of bile to the liver which ultimately damages the liver cells themselves. Primary sclerosing cholangitis is similar, occurring both inside and outside the liver. In autoimmune hepatitis, the body’s own immune cells attack the liver cells, thinking they are harmful.
Alicia’s condition is exceedingly rare. During a trip to the Mayo Clinic in Rochester, Minn., in June, the Hrubys were told there has been only 31 diagnosed cases like Alicia’s in the world. None of these cases have been in the U.S., so doctors are having a difficult time finding where these cases have occurred and what treatments were used.
“They’re just struggling to figure out how to fix her,” Hruby said. “They don’t have her on the liver transplant list because they’re afraid an operation could kill her.”
Removing Alicia’s spleen is not an option, according to Hruby, because she needs it to keep fighting her autoimmune diseases. Alicia is on 18 different medications, including numerous pain medications simply so she can get around.
“She’s in good spirits,” Hruby said. “We walk her every day to get her to a point where she can walk on her own. We’re trying to build her up, because they said she has less than a 20 percent chance of surviving any operation.”
Still, Alicia stays active. For the last week, she has been out walking and pushing herself on a wheelchair, she said. Her goal is to be able to attend some classes at Ringgold High School when her freshman year begins this year.
Some days are worse than others, she said, but “you got to keep a positive attitude.”
“I have to take a lot of pills,” Alicia said, “but I actually manage my pills pretty good for someone my age.”
Alicia has been enjoying some of the celebrity status the benefit concert has afforded her. On Thursday, she appeared on WXDX-FM with DJ Abby Krizner to talk about the benefit and see how a radio station works.
“My cousin texted me after the show and said, ‘You sounded so mature!’” she said.
Through it all, Alicia keeps smiling.
“It’s like, Where’s depression going to get you?” she asked. “They were worried I was going to have depression. I’m like, really? Do I seem like a depressed person? I’m too upbeat. There’s no ‘Debbie Downer’ in me. Even when I’m talking about the worst-case scenario, I’m still smiling.”
Steve Craven has been organizing Rock for Life since day one. He and fellow bandmate Matt Ferranee put together the first event in honor of a firefighter, “and it kind of snowballed from there,” he said.
After putting together a benefit show for a girl from the Avonmore area, the show became a yearly event, turning into the two-day concert it is now.
The shows almost stopped four years ago, however, when Craven and Ferranee noticed the show was growing too large for them to handle on their own. Volunteers were in short supply, and Craven began having anxiety that the large crowd could grow out of control.
“It was a little overwhelming,” he said, “so I told Matt, ‘Unless somebody steps in or helps us, I’m not going to do it anymore.’ So the Leechburg Moose actually that following year came out and helped us organize the event and did security.”
Craven credits the Leechburg Moose Family Center #102 for saving the show. The concert is now tied into the Moose’s own nonprofit charity for children, Moose Heart Charity. Craven and Ferranee, both members of the Moose lodge, now handle the music end of the event, while the lodge handles everything else — upkeep of the land, security, even building a new stage for the show.
Craven will also be playing in the show in two separate bands — Slant6 on Friday and After the Fall on Saturday.
“This year’s may be the most emotional one yet,” Craven said. “It’s not even about the money. Our goal is to make (Alicia) feel like a rock star, like a celebrity.”
She will be driven to the show in a limousine. Her family is planning to stay in the Saltsburg area for the duration of the event.
Hruby described her daughter as “a fighter” and knows she will enjoy the show.
“We’re not pitying ourselves in any way, shape or form,” she said, “and that’s what these Rock for Life guys know. They know we don’t feel sorry for ourselves. They know we’re fighters.”
Rock for Life begins Friday with the first band slated to start at 5:30 p.m. and the last at 10:30 p.m. It continues the next day at 12:30 p.m. The all-ages show costs $20 for both days. The goal is to help raise $5,000 for Alicia and her family.
More information can be found at www.rockforlifeconcert.com. Those looking for more information about Alicia can visit angels4alicia.com.
PHOTO: Event organizers Matt Ferranee, left, and Steve Craven posed recently with Alicia Hruby, 14, and Abby Krizner, a DJ for WXDX.