The 13-year-old son of Marc and Juanita Verfaillie, Kyle, was diagnosed with Rassmunsen’s syndrome at the age of nine. This came as a huge shock to the family whose lives have never been the same since.
Rassmusen’s Syndrome is an auto-immune disease in which the brain is literally consumed by the body’s immune system. Sadly this disease is fatal. And because only one in ten million people suffer from this syndrome, the pool of experts is relatively small.
After his first fit Kyle’s condition deteriorated rapidly. A few months after the first attack, Kyle was experiencing up to 200 seizures a day. MRI scans revealed that Kyle’s brain was busy shrinking. “His brain size diminished by 1.28cm,” his father told Bloemfontein Courant. Something drastic had to be done. Medication appeared to have no effect. There was only one option left: major brain surgery.
Kyle’s first operation, which lasted 13 hours, was on Valentine’s Day, 2017. Afterwards Kyle was very sick. He vomited violently and worst of all, the seizures didn’t stop. Marc alerted the doctor. A second session of surgery was scheduled in June of 2017. Unfortunately a complication arose when a major artery was severed by accident. A 4-hour operation turned into an epic 12-hour fight for survival. During the operation, Marc was given the option of “signing away” his son’s life. But he refused. Ultimately, half of Kyle’s brain was removed during the surgery – unfortunately it was the left side, the part of the brain that governs motor functions. Over time, the empty part of Kyle’s skull would be filled with spinal fluid. He survived but he was weak and practically helpless. His ability to walk and talk was completely compromised.
And then one day Marc had an idea that would change his son’s life forever. A dive master himself, Marc decided to “teach” Kyle to swim in a specially equipped swimming pool. He especially concentrated on Kyle’s right leg, which was virtually paralysed.
A few months after starting the swimming pool therapy the parents heard their daughter, Chloe, scream. Kyle was on his feet, and although he was walking with difficulty, it was the first steps he had taken in months. It was an unbelievable improvement. Kyle had recovered more from Marc’s swimming therapy than what two major brain operations could achieve.
Today Kyle is a different child. He has a small, limited vocabulary, but he can speak. He can also walk on his own and has developed basic motor functions, although he will never develop full use of his right arm again and his vision has been marginally impaired. But much more importantly, he looks happy and content.