ANSON — While many teenagers this summer are active outside, one 14-year-old boy is making regular hospital visits and hoping he receives a new liver.

It will eventually become a life or death situation for Brent Groder, who recently finished eighth grade at Carrabec Community School. But although Groder has liver disease resulting from cystic fibrosis, all he wants is to be treated like others his age, he said.

“I try to look at myself as a normal boy, but other people make me feel like I’m not,” he said recently, sitting at his kitchen table. Next to him, his two-and-a-half-year-old nephew, Connor Kirk, ate Chex Mix and mimicked the words he heard in a high, joyful voice.

Groder’s mother, Charlene Newhall, 37, doesn’t work because of the time required to care for her son. “I get a lot of my strength from him,” she said. “I have my moments when I ask why or how, but I get through them and move forward.”

Though Groder may want to be treated like a normal boy, his community is helping him and his family with fundraisers and emotional support. At their eighth grade graduation party recently, Groder’s classmates gave him a skateboard signed by Rob Dyrdek, a skateboarder from California.

“More people need to see how strong a little boy can be,” said Valerie Abruzzese, of Anson, a substitute teacher in the school district who organized the party. “We just take so much for granted, and we worry about our everyday crises. Compared to what they’re going through, my crises are like a bread crumb.”

Groder is one of about 224 people in Maine with the genetic disease cystic fibrosis, which causes mucus to build up and clog the body’s organs. While mucus clogs some people’s lungs, it has blocked Groder’s digestive tract. The build-up stops enzymes from getting to his intestines, where they are needed to break down food and provide his body with nutrients.

That means Groder is underweight: He weighs just 110 pounds, though he is 5-feet, 6-inches tall. He’s technically considered malnourished, his mother said. He requires a feeding tube at night and is often fatigued.

To have the disease — which is not contagious — people must inherit the defective cystic fibrosis gene from each parent. Newhall said neither she, nor Groder’s father, Timothy, 39, of Anson, ever knew any of their relatives to have the disease. The two are now divorced but still care for Groder together.

Born a month early, Groder stopped breathing shortly after birth but was resuscitated, Newhall said. Soon after he suffered from pneumonia. By the time he was one year old, he weighed just 15 pounds. He’s had three surgeries since he was 5 to remove nasal polyps, which are inflamed tissues inside the nose.

During Groder’s first year of life, he was home about one month, with the rest of his time spent in hospitals, his mother said. In the last six months, he’s had 10 doctor’s visits and four hospital stays. He often travels to Bangor or Portland hospitals, which require roughly an hour-and-a-half of driving.

People with cystic fibrosis are likely to develop complications, such as diabetes, chronic respiratory infection or recurrent pneumonia. For Groder, it’s liver disease.

So, in addition to cystic fibrosis, he must deal with the extreme discomfort of having a failing liver, which doctors recently diagnosed. In mid-May, Groder’s spleen was twice its normal diameter, Newhall said, and his liver was so small, a doctor could barely feel it. An ultrasound revealed his blood was backing up into in his spleen, since it couldn’t flow through his damaged liver.

The back pressure of blood caused fragile veins to balloon in his esophagus, his mother said. To prevent those veins from bursting, and Groder from bleeding to death, he must regularly see a doctor who inserts a device that puts little rubber bands around the veins, stopping the blood supply.

Liver disease means Groder’s spleen traps his platelets, which are small particles that help the blood clot. He therefore requires regular platelet transfusions. Liver disease is also causing Groder to lose his memory.

He’s been out of school since February to reduce the risk of infection and said he misses seeing his friends there, but he doesn’t miss homework. He relied on a tutor this winter and spring, and in his free time he likes to skateboard, play video games — his favorite is Call of Duty: Black Ops — and hang out with friends. Until this year he was in the school’s weightlifting program.

Groder’s family is hoping he will be eligible for a living related donor to provide him with a liver. He has three siblings: Ashley, 18; Brittnay Kirk, 21; and Christopher Craig, 20. If one is eligible, a transplant could happen in the next six months, Newhall said. A donation from a cadaver could take two months to two years.

Newhall’s greatest fear, she said, is that her son won’t get a liver in time. The family is awaiting confirmation that he is in fourth-stage liver failure, the final stage. That designation would place him on a donor list.

Just as no two people with cystic fibrosis display the exact same symptoms, so too is there no way to accurately predict how long Groder will live. In 2009, the median predicted age of survival was about 36, according to the Cystic Fibrosis Foundation’s Patient Registry Report.

That age continues to increase over time as more research is completed and the availability of specialized care becomes more readily available. It’s not the cystic fibrosis, however, that scares Groder. It’s the liver failure.

He said he doesn’t think of dying, and he doesn’t like to open up to people about being sick because he doesn’t want to be treated differently. He’s looking forward to driver’s education and learning how to drive a car, he said. He talks about becoming a computer game designer or a lineman with an electric company when he grows up. The coolest thing he’s done, he said, is see the lights of Montreal at night.

His mother has been with him through everything. When he stays in the hospital, she sleeps on their couches. She inserts his feeding tube, makes sure he takes his medication, packs, organizes travel and researches the disease. His father, and his father’s fiance, Lindsay McKinely, are very involved in Groder’s care, she said, as well as her husband, Kirk Newhall, 41. Groder has MaineCare, but the costs of travel add up quickly, his mother said.

The hardest thing for her, she said, will be seeing her son emerge from having a liver transplant, since he’ll be on life support for several days. His prognosis will good if he receives a liver, she said, and if the transplant is successful.

Nikayla Abruzzese, 14, of Anson, is friends with Groder and said she’s worried about him because she doesn’t know what will happen next. “He’s very nice and caring, and the community should help because he could really use the support for all he’s going through,” she said. She helped organize a toll booth on the Anson-Madison bridge. Others are organizing a benefit barbecue.

The barbecue will be held from 4 to 7 p.m., this Saturday, at the American Legion in Madison. Tickets are $8 per adult and $4 per child younger than 12.

Valerie Abruzzese, the substitute teacher and Nikayla’s mother, said Groder is a good person who has taken his disease in stride. “Look at the sunshine and put a smile on it, and that’s Brent right there,” she said.

Erin Rhoda — 474-9534

[email protected]


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