Matthew Beightol was enjoying one of the best volleyball matches of his career against one of the state’s premier teams.
He was energetic and enthusiastic. It was the type of performance in a big-time match the Maplewood senior had been looking for since his freshman season. But midway through the second game, Beightol’s demeanor changed.
He began talking to himself and walking in circles around the court. His skin turned nearly transparent, his breaths louder and labored, and his arms and face went numb. The excitement and energy he had shown just minutes before was gone.
His father, Monte, thought it might be the moment he and his wife, Tammy, had feared since the week before Christmas in 1992.
Matthew suffers from a genetic disorder known as hypohidrotic ectodermal dysplasia, a birth defect that effects the skin, hair, teeth, nails and sweat glands to a variable degree.
In Matthew’s case, the disorder also prevents his ability to sweat, a means for regulating the body’s temperature and controlling the risk of heat exhaustion or heat stroke. And on that warm, humid day at Meadville Area High School, Matthew nearly paid the price.
“He had tears in his eyes,” Monte said. “I knew there was something wrong. I thought that was it. I thought he had gone too far. ... I just thought he had gone too far.”
Monte and his wife, Tammy, welcomed Matthew, their third child, into the world on April 9, 1992.
Within hours of his birth, a team of doctors at Titusville Area Hospital determined Matthew was suffering from pneumothorax, known more commonly as a collapsed lung. The condition made it difficult for the infant to breathe and resulted in his transfer by helicopter to Hamot Medical Center at a mere seven hours old.
Matthew spent a week at Hamot receiving treatment for the collapsed lung before going home for the first time. But just days later, he was flown back to Erie with aspiration pneumonia, caused by breathing in foreign material, like foods, vomit or fluids from the mouth.
“He had aspiration pneumonia several times,” Tammy said. “We were at our pediatrician in Oil City weekly.”
The only thing doctors could point to as a possible cause was the tightly-wrapped blanket they often had Matthew nuzzled in as they had done with their two oldest children, Chris and Rebecca.
They thought the blanket was causing Matthew to become too warm, which then made it difficult for him to breathe.
“You’re always told to keep babies wrapped up tight in blankets,” Monte said. “But apparently we were wrapping him too tight before we knew what was wrong and were causing him to go into respiratory distress.”
It was the week before his first Christmas, and just nine months after Matthew’s birth, that the search for a real cause intensified. Matthew was at his family doctor in Oil City with another bout of pneumonia when the doctor decided to have him transferred to the Neonatal Intensive Care Unit at Children’s Hospital of Pittsburgh. Once there, doctors determined it was possible Matthew was suffering from a hole between his trachea and esophagus, resulting in the numerous cases of aspiration pneumonia.
“They were going to go in and repair that with surgery,” Monte said. “We went ahead and met with an ear, nose and throat doctor to have them take a look before they went in. And there wasn’t a hole there. So we were back at zero.”
“I just remember thinking, ‘What is it? What is it? What could it be?,’ ” Tammy said. “Something just wasn’t right.”
That’s when Monte remembered what might seem to many as a minor detail in his son’s struggles with pneumonia. Monte never recalled his son sweating when he broke a fever.
“I said, ‘I may be a dirt-old farmer from Franklin, but why?’ ” Monte asked. “He had several fevers as a baby. But he never sweat.
“We talked to a lot of different doctors and things would be brought up. There we were in a room with a bunch of doctors and finally I said, ‘In all the times Matthew had a fever, he never broke a fever sweat. Never.’ Right then one of the doctors in the room said, ‘I bet he has …’ and rambled off this long name.
“(Tammy and I) just looked at each other and we said, ‘What’s that?’ ”
“We had no idea what it was,” Tammy said. “But finally we had a name, hypohidrotic ectodermal dysplasia.”