Mother’s Determination: How a Mom Solved Her Son’s Mystery Illness Through Online Research. An

According to the Today show, Bobby Leithauser, from Marco Island, Florida, was originally diagnosed with dysautonomia, a malfunction in the autonomic nervous system, and Ehlers-Danlos Syndrome, a tissue disorder – but the conditions didn’t account for all of his ailments, which included stomach afflictions, loss of vision and agonizing neck pain.

Refusing to accept her son’s initial diagnosis, Bobby’s mom, Keri Leithauser, began researching his symptoms online, and came across the work of Dr. Harold Rekate, a neurosurgeon at the Cohen Children’s Medical Center in New York, who soon discovered her son had a Chiari malformation, a treatable, yet rare condition that affects the cerebellum, the part of the brain that controls balance. 

Last December, Dr Rekate operated on Bobby, performing a surgery that he had invented, to fix the condition which cause his spine to press into his brain.

Three months later, Bobby recalled the days after his surgery, saying he ‘couldn’t believe’ his unbearable pain was gone after years of suffering.

The teen’s health problems seemingly came out of nowhere when he was only nine years old, when the once-active child began to experience crippling stomach pain, prompting his parents to start limiting his food to the point that he was only consuming blueberries and chicken.

But despite their best efforts, his ailments continued.

Next came headaches, tremors and an inability to control his body temperature or regulate his blood pressure.

But even after Bobby was diagnosed with dysautonomia and Ehlers-Danlos Syndrome, his physical suffering continued. 

‘It was really horrendous pain and I couldn’t hold my head up for more than 10 minutes at a time,’ Bobby explained.

As his condition worsened, his worried mom began doing research on the internet and contacted other parents whose children had similar issues.

‘I started putting the pieces of the puzzles together,’ she said. 

Her husband Tom noted that because their son’s issues started with severe abdominal pain, they found themselves focused on the wrong area of his body.

‘The whole time we were looking at stomach pain, never imagining that the problem could be in another part of his body, like the brain,’ he said. 

Mrs Leithauser’s determination to cure her son eventually brought her family to Dr. Rekate. As soon as the neurosurgeon saw scans of the boy’s skull and spine, he immediately knew what was wrong.

The scan revealed that Bobby’s skull and spine were not held together properly because the ligaments were too loose. The misalignment was causing his brain to be squeezed from the front and the back. 

‘I knew that he could be helped by surgery,’ Dr Rekate said. ‘I knew that the chronic pain that he was in, that the inability to exercise could be helped, that we could change his life.’ 

Bobby is now walking again, and his chronic pain and headaches are gone as expected. But what is even more surprising is that the issues associated with his autonomic nervous system suddenly started to get better as well.

‘To me, it’s a miracle. It really is a miracle,’ Mr Leithauser said.