Walking for Ben: Family finds support for boy with cystic fibrosis
BY TINA AKOURIS firstname.lastname@example.org May 5, 2013 10:34PM
Mark Dames (top), Ben Muhich and Julia Dames wear Team Ben T-shirts to collect donations in Channahon, Ill.,for the Cystic Fibrosis Founation's Great Strides Walk in Joliet, Ill. | Supplied photo
Updated: June 7, 2013 6:08AM
Julia Dames wanted to do something special for a friend.
So the little girl from Channahon and her brother decided to walk around their neighborhood and tell people about a boy named Ben Muhich.
Ben is only 6 and has cystic fibrosis, a genetic disorder that cuts many lives terribly short.
Julia Dames wants to change that outlook for her friend.
“I really want to help him beat cystic fibrosis,” Julia said. “To me, he looks perfectly fine and healthy, but inside he’s not. I’m very lucky I don’t have to take treatments like Ben, and I feel very bad for him.”
The Muhich and Dames families will be participating in the annual Cystic Fibrosis Foundation’s Great Strides Walk at 10 a.m. Saturday at Pilcher Park in Joliet. The group will walk as Team Ben.
The walk is one of many CFF walks around the Chicago area. The one at Pilcher Park is the fifth annual event in the Joliet area.
The Muhichs found out Ben had cystic fibrosis a few months before the first walk took place in Joliet in 2009. And even then the Dameses knew they wanted to help out their friends. This will be their fifth walk in honor of Ben.
Theresa Dames said her daughter, Julia, and 12-year-old son, Mark, have raised about $3,500 through donations taken at their school, Three Rivers in Channahon. It is the most money the two have collected since they started fundraising for cystic fibrosis in 2010.
“I think Julia is a lot like her mom,” said Michelle Muhich, Ben’s mother. “I’m really grateful they are helping, but they help a lot of other people, too.”
Dames said her children also have raised money for an orphanage in Mexico, among other charities.
“I encouraged them to help (other charities), but with Ben they took it upon themselves to do something,” Dames said.
Dames said her children also collected money for the walk by going door to door in their Channahon subdivision. In years past, the children asked for donations at Pioneer Path School, the school they used to attend.
“The kids are so giving, and it’s overwhelming what these kids will do,” Dames said.
Day in the life
Cystic fibrosis causes a buildup of mucus in the lungs, digestive tract and other areas of the body. The life expectancy for many with the disorder is only 37 years. Close to 30,000 Americans have the disorder.
Muhich said Ben starts his day with breathing treatments for about 20 minutes, wearing a vest that vibrates. It is designed to loosen the mucus in Ben’s lungs so he can expectorate.
Another problem with cystic fibrosis is the body cannot absorb many nutrients, so Ben has to eat four large meals and several snacks a day. Muhich said Ben drinks about 3 gallons of whole milk each week and consumes about 1,800 calories a day.
Before bedtime, Ben has to do another treatment for about 20 minutes with the vibrating vest.
He cannot get sick, either. Since mucus builds up in the lungs and digestive tract, Muhich said, treating a bacterial or viral infection is more of a struggle for a cystic fibrosis patient.
Muhich said cystic fibrosis patients are given stronger antibiotics for a longer period of time when they get sick. That could result in the patients building up an immunity to those drugs.
Muhich said that because kids like Ben have to keep eating all the time anyway, even when they are sick, all those extra meals could cause an upset stomach and acid reflux.
That aside, the Muhichs are trying to keep their son’s life as normal as possible. Ben plays baseball, which helps provide a sense of normalcy to his life.
“His teachers do a good job with keeping a sterile classroom environment,” Muhich said. “When Ben gets sick with a cold, he can lose anywhere from 2 to 6 pounds in a matter of days.
“Sometimes we feel like we are on lockdown.”
What lies ahead
Muhich said she and her husband, Bob, carry the gene that causes cystic fibrosis. She said every time they have a child, there is a 25 percent chance the child will have the disorder. Muhich said Ben is an only child because she and her husband know the obstacles and difficulties that would arise if they had two children with the disorder.
“We know it will be too hard to handle to have two,” she said. “But we know this is the right choice.”
Ben was diagnosed in March 2009 when he was 2. Doctors have told the Muhichs that Ben has a tiny inflammation on his left lung. It is something to keep an eye on, because when cystic fibrosis patients reach their 20s, they can be candidates for lung transplants.
A drug called Kalydeco can help trick the body into halting the mucus buildup, but it works only in a small percentage of cystic fibrosis patients. Those patients have to have a specific mutation in the cystic fibrosis gene for the drug to work properly.
“I can’t even scratch the surface of all the knowledge that is out there,” Muhich said of the drug research.
Dames wants to be there for her friends when times get tough with Ben or just during the everyday struggles of having a child with cystic fibrosis. And Dames is proud of her children, who wanted to help a child who isn’t as lucky in the health department as they are.
“I wanted to instill in my kids to give back and I feel very fortunate that they have,” Dames said. “(Ben) is such a sweet kid and I see his mom struggle with it. I get emotional thinking about it, because it is heartbreaking.
“They wanted to make a difference for him, because (a cystic fibrosis patient’s) life could end sooner than expected.”
Registration for the walk is at 8:30 a.m., with the walk starting at 10 a.m. and lunch at 11 a.m. The walk is free, but donations will be accepted.
For more information, visit cff.org.