Joe Sullivan started gaining weight in the summer of 1978, when he was 17 years old. He put on 40 pounds—all water, but he didn’t know that.
By October, the swelling in his legs and ankles kept him out of school, and a tutor started coming to his house. Months passed. High doses of prednisone—the drug required to treat the swelling—kept him up at night, but, “presto magic,” recalls Joe, “I got better, went back to school and graduated with everyone in May. I didn’t understand what was going on. My parents weren’t the types to speak about it.”
Joe started college that fall, hitchhiking the 32 miles between home and school. The semester went smoothly, and all seemed well until a couple of days after Christmas, when he was admitted to Boston Children’s Hospital. He was diagnosed with nephritis, inflammation of the kidneys.
Joe doesn’t remember much from that time. “Next thing I knew, I was on dialysis,” he says. “Soon I was going for five hours per day, three days per week. I was so sick. I weighed about 80 pounds. I had to pretty much stay in the hospital.”
That dialysis schedule continued for more than six months, until Joe learned he was eligible for a kidney transplant. “I was lucky,” he says. “My older sister Kathi was such a good donor match that the doctors said we were practically identical twins born seven years apart.”
The kidney from his sister that continues to sustain Joe, now 53, was transplanted on Thursday, August 28, 1980. “After the transplant,” he says, “I spent a week on my back in the ICU. And the rest is history.” And it is: 34 years, and counting. …
Not all seizures in children are violent. Some could even go unnoticed. Others might cause a child to go instantly dark, like an unplugged lamp—unable to respond and staring into space. That’s what happened to Collin Goodchild on July 1, 2008, when he was almost 6.
After a second seizure almost 10 days later, Collin came to Children’s, unable to walk in a straight line or follow a moving finger with his eyes, and his arm was jerking uncontrollably. “Our minds were racing,” says Collin’s father, Mark. “It was a complete nightmare.”
Children’s doctors diagnosed Collin with encephalitis, an inflammation in the brain that can be caused by a number of things, including viruses, bacteria and the body’s immune system turning against itself.
Fortunately for the Goodchilds, encephalitis—which is often confused with the more dangerous bacterial meningitis—is rarely fatal in the United States. But identifying its cause can be a real challenge. There are a few tests that can recognize certain causes, but often doctors and families never know for sure what’s behind a child’s encephalitis. “The doctors tested Collin for everything they could, but everything was coming back normal,” says Mark. “I was glad he didn’t have the bad things he was being tested for, but it wasn’t giving us any answers, so it was kind of bittersweet. ”
Encephalitis is known to cause symptoms like fever, confusion and difficulty walking and talking, but these often subside over time. Unfortunately, there’s no way to know how long this might take, or what, if any, long-lasting effects the encephalitis might lead to down the road. “The doctors can tell you, ‘We hope he’ll talk again. We hope he’ll walk again. We hope he’ll eat on his own,'” says Mark. “But they don’t know—that’s what’s so scary.” …