Teenager’s illness remains mystery to area family
Pattiann Berton and her son Patrick discuss the next steps in diagnosing his health condition. The Bertons have spent the last two years trying to diagnose Patrick’s health problems, which have left him in a wheelchair.
It’s been two years since Patrick Berton began to have health problems and started searching for answers. Berton’s condition has still not been identified, and his condition has left him in a wheelchair and is decreasing his vision.
Fourteen-year-old Patrick Berton loves football.
Ask him about the NFL draft, the Pittsburgh Steelers’ chances of making the playoffs this year or the career statistics of NFL players and he’ll respond with Adam Schefter-like knowledge about the game.
At nearly 6 feet, 2 inches tall, Patrick would like to play football at Trinity Middle School, like he used to, but for more than two years, he has been battling an unknown illness that has left him in a wheelchair and fighting a variety of other health issues.
Patrick suffers from debilitating migraines, blurry vision and sensitivity to noise and light, and although his parents, Tom and Pattiann Berton, have taken him to top specialists across the country, nobody has been able to diagnose the unexplained symptoms.
“More than two years and six months later, we are no closer to finding out what’s wrong with him than we were the day this began,” said Pattiann.
Patrick’s ordeal started in September 2011 after a collision during a football game. A physical exam at a pediatrician’s office ruled out a concussion, but in the following weeks, his symptoms worsened. He complained of dizziness and leg weakness, developed hand tremors and was unable to sleep through the night.
Children’s Hospital in Pittsburgh’s diagnoses of spinocerebellar ataxia type 8, a genetic, progressive and degenerative disease, and conversion disorder, an unusual psychological disorder, both have been thrown out, Pattiann said, and tests for mitochondrial, metabolic and neural disorders have not offered anything conclusive.
“One doctor told us that we’re beyond modern science. Whatever Patrick has, has not been discovered yet and we might have to wait for science to catch up to us,” said Pattiann.
She now is trying to get Patrick into the National Institute of Health’s Undiagnosed Disease Program, in Bethesda, Md., where Dr. William Gahl and his team work to solve medical mysteries that have eluded a diagnosis.
Also this spring, Patrick traveled with his mother to the University of Michigan’s Kellogg Eye Center, one of the country’s best clinics for retinal dystrophy patients.
Patrick said he is tired of being “poked and prodded,” and isn’t sure that after two exhausting years of testing he wants to undergo any more tests to find out what’s wrong with him.
“I hate going to the doctor’s. It’s discouraging when they think they might have some answers but then they don’t,” said Patrick.
While his family’s search for the cause of his illness continues, Patrick has tried to resume a normal life.
A bright, straight-A student, Patrick completed middle school through homebound instruction and returned to school at the beginning of his freshman year in August.
He attends classes for 4 1/2 hours a day, and with the help of his teachers, therapists, aides and adaptive technology (the retinal dystrophy has affected his vision, so he can no longer read, and he has hand tremors that make it difficult for him to write) he has earned straight As again this year.
“His positive attitude is incredible considering everything he’s gone through and continues to go through,” said Jo Horne, an occupational therapist who assists Patrick at school. “He doesn’t seem to let it get him down.”
He spends his time playing Xbox, hanging out with his three younger brothers, and watching movies. He even attended the formal fall dance with a friend.
Her experiences with Patrick’s illness have led Pattiann to start an organization, Answers 4 Patrick Foundation Inc., which provides support and help to individuals and families who have undiagnosed or genetic disabilities.
Pattiann does not plan to quit her mission until she finds out what’s wrong with her son.
“I’ve cried, I’ve broken down, but I have great faith, and while some days I struggle with it, most days I think there’s a reason we’ve been given this,” said Pattiann. “We will not give up.”