KANSAS CITY, Mo. — Josh McElroy is calm as he picks out a book at Children’s Mercy Hospital. He’s focused and happy as he and his mother share it. It’s hard to believe that a year ago, the teen from Goddard, Kansas, had outbursts many times a day. They were so bad he couldn’t go out in public.
“Because he would get very upset, scream and yell. He would hit. He would kick. Sometimes bite,” said his mother, Jennifer McElroy.
Dr. James Daniel, a gastroenterologist at Children’s Mercy, saw it, too.
“Josh was a mess neurologically. I don’t know any other way to say it,” said Dr. Daniel.
Josh had a rare disorder called ASA that causes developmental delays and severe behavior problems. His liver lacked an enzyme. Ammonia accumulated in the blood and hurt the brain. Diet and medication weren’t helping.
It was becoming life-threatening. Just one possible solution remained — a liver transplant to give Josh the enzyme he lacked. Fewer than 25 liver transplants had been done in the world for kids with ASA, and there was only one published report of success.
“There was concern he might not get any better. He might just stay the way he is,” said Dr. Daniel.
A year ago this month, a donor match was found. Josh gladly shows his transplant scar now. Within days after the surgery at Children’s Mercy, his behavior changed. The outbursts stopped.
“Great,” said Josh when asked how he feels.
His mother says the quality of life for Josh and his family has dramatically improved.
“He goes to the store. He’s happy at school. He and his siblings have a whole new bond that it was hard to have before because they were to a point almost scared of him,” said McElroy.
Josh turned 16 on Friday. A happy birthday, indeed.
Josh is taking half as many medicines now even though he must take drugs to prevent rejection of the new liver. He was one of nine kids who had liver transplants at Children’s Mercy last year, and the only one with this rare condition.