Brenda and Brian's Story

by Bethany Prange, St. Louis Area Foodbank

Brenda and Brian were high school sweethearts from neighboring small towns in Randolph County, Illinois. He was from Percy; she was from Steelville. They met, incidentally, because his sister and her brother were dating. While their siblings’ didn’t stay together, Brenda and Brian did. They married in 1988.

The young couple found a home together in Percy. Brian took a job doing foundry work and Brenda started a part-time job at the hospital. In 1991, they had their first child. Bradley was a healthy baby, and at first, they had no reason to suspect he was sick. But when Bradley was three months old, he began losing weight. Brenda and Brian began to notice the baby wheezing and struggling to breathe. “We couldn’t figure out what was wrong,” Brenda recalls. “Right before he turned a year old, we had an incident at home where he quit breathing.” The frantic parents called an ambulance. Bradley was taken to a local hospital where doctors ran tests, but couldn’t determine what was wrong.

It took a month to get in to see a specialist, and in the meantime, Bradley had another severe episode at home. Brenda and Brian finally took Bradley to SSM Cardinal Glennon Children’s Medical Center in St. Louis. There, he was diagnosed with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system. The disease causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. Cystic fibrosis also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Though cystic fibrosis is inherited and genetic, Brenda and Brian had no known relatives with the disease. Both parents must be carriers of the gene for a child to develop the disease. “Neither of us knew anyone who had it, and didn’t know either of us had the gene for it,” Brenda says.

During that first visit to the hospital, baby Bradley and his parents were at Cardinal Glennon for two weeks. From that point until Bradley turned 16, the family would make the trek from Percy to the St. Louis hospital hundreds of times – often several times a week. The drive is roughly 150 miles roundtrip. “It’s a $75 day to us,” Brenda says.

Brenda and Brian don’t want to move from Percy because they treasure the support of their family and friends there. Plus, Bradley has made many friends in the community. Bradley attended school until he was in the third grade. At that point, his parents hired a tutor to teach him at home. “Every time we sent him to school he would get sick and we would end up in the hospital for two weeks on IVs,” Brenda says. Bradley’s lungs were so weak and vulnerable to infection, he couldn’t handle being around other kids. Even when he stayed at home, he required medications, regular IVs, constant doctor visits and intense breathing treatments that lasted for hours at a time.

“I couldn’t work because of having a sick child and being at the hospital with him,” Brenda says. “No one would watch him. No one wanted to take care of his meds.” Fortunately, Brian’s job offered health insurance that covered most of Bradley’s medical expenses. The family was able to get Medicaid pay for another portion. But even with most medical costs covered, making ends meet was, and is, a struggle. Transportation costs – gas, lodging, food – for countless trips to hospitals eat up their living budget.

By the time he was 15, Bradley’s health had declined so far that he needed a double lung transplant. “I was so bad I couldn’t get off the couch to go to the bathroom. They’d have to carry me,” Bradley says. Bradley was nervous about the surgery, and the pain that would follow. His parents had their own concerns. “We were scared of losing him on the table,” Brenda says. “But the doctor told us we only had about two months left.”

Faced with those options, Bradley and his parents chose to have the transplant. The surgery was successful. For three months after the surgery, the family lived at the Ronald McDonald House so Bradley could be near the hospital for therapy, blood work and tests. Brenda and Brian are very grateful to Ronald McDonald house for their help and support during that time. But the two months Brian spent away from his job, combined with the extra expenses of living away from home, took a financial toll on the family. “You still had expenses up there and you still had to pay for your bills here at home,” Brenda says. Thanks to the double lung transplant, Bradley no longer has to do breathing treatments. His health regimen is reduced to occasional doctor visits, a monthly IV treatment, and pills – though he still takes 17 different types of medicine.

In 2005, Brenda and Brian had given birth to their second son, Blake. The couple wanted another child, and had discussed their options with doctors. Their chances of having another child with cystic fibrosis were 1 in 4. Blake was diagnosed with cystic fibrosis as an infant. Blake has had three sinus surgeries, one of which required four trips to St. Louis in one week. “I know down the line that Blake will be in the same boat Brad was,” Brenda says. But for now, Blake is a wild, red-headed 7-year-old who idolizes his big brother and keeps the whole family on their toes. And between him and Bradley, they make it hard for Brenda to keep food in the house.

One side effect of cystic fibrosis is that patients have a healthy appetite, but don’t gain weight. Blake and Bradley are voracious eaters, who need to eat often. “They have to take pills when they eat to help absorb the fat in the food,” Brenda says. “They’re constantly hungry.” When they’re feeling up to it, Bradley and Blake go deer-hunting with Brian. The family butchers their own deer meat, and eats it all year long to save on buying beef and pork.

Brenda visits Chester Christian Food Pantry to help stretch their grocery budget. “Whatever I get at the food pantry, that’s what I don’t have to buy at the grocery store,” Brenda says. “I can use that extra money for the trips to St. Louis.” Brenda and Brian pay all the bills of a regular family – mortgage, utilities, phone and car payments. But the added expenses of trips to the doctor, food and gas, mean they sometimes need a little extra help.

Their extended families have helped emotionally and financially, pitching in whenever they can. When Bradley turned 16, his grandparents and aunt and uncles pooled their resources to buy him a car. Brenda, Brian and Bradley, now 21, understand what this disease means in the long-term. But Bradley’s outlook has always been positive. “Brad always says he ‘lives life to the fullest,’” Brenda says. “And he does.”

The Ruebke family shared their story in mid-March 2012 with Bethany Prange, communications coordinator at the St. Louis Area Foodbank. Their personal circumstances may have changed since the original interview.

 

 

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