Doctors had to remove half of a ten-year-old boy’s brain to prevent the debilitating seizures that were ruining his life.
Kyle Verfaillie was perfectly healthy just six months ago. Then the lad from Ermelo in Mpumalanga Province in north-eastern South Africa, suddenly started suffering seizures.
But they were infrequent and did not impact much on his life, said his parents Marc and Juanita.
Spokeswoman for the family Annatjie Bouwer said: "The seizures would happen about twice a week. The family even went away on holiday in December for Christmas.
"Kyle could still ride a bike, swim, dance and jump on a trampoline. The seizures became worse and started happening more often. Eventually they were happening three times a day."
Doctors tried a few tests and eventually diagnosed Rasmussen’s encephalitis.
The disease mainly affects children. An unknown trigger sets the body’s immune system attacking one half of the brain, which then swells up, causing seizures, partial paralysis and blindess as well as cognitive impairments.
Ms Bouwer added: "The tests revealed that the entire left side of his brain had been affected by this rare but also relatively aggressive disease.
"Later the seizures were happening anything from 30 to six minutes apart. By January Kyle’s speech had been so badly affected that it was difficult to understand what he was saying, he started to stutter and couldn’t read.
"They were referred to a specialist in Cape Town and told about the possibility of a brain operation."
By this time Marc and Juanita were barely sleeping, as they had to deal with one of Kyle’s seizures every few minutes. They had to restrain him during seizures to prevent him from hurting himself.
He was also having breathing difficulty during the fits.
On 14th February Kyle underwent a 12-hour operation to remove the left side of his brain in Cape Town, on South Africa’s south-west coast.
Ms Bouwer said: "Valentine’s Day will never be the same for us. The doctors texted us every three to four hours to let us know that they were making progress and were satisfied.
"There were no complications and doctors were satisfied with the result. They were, in fact, shocked at how well Kyle handled the operation and the progress he’s made."
Kyle has now been discharged and his parents hope to take him home soon.
Ms Bouwer said: "A long road of rehabilitation lies ahead. It will mean that although the right side of his body is now paralysed, he will be able to walk again and use his arm. Only time will tell if he’ll be able to use his fingers again.
"He’ll also be able to learn to speak again. At the moment he communicates using hand signals, head movements and by pointing to pictures. The room is very quiet without his chatting. His sight has also been affected because at the moment one half of each eye can’t see at all.
"At the moment he is very much aware of what’s going on around him and can communicate, laugh and watch TV."
Doctors hope the right half of Kyle’s brain will over time take over the functions of the missing left half.
The financial implications are daunting for the family, says Ms Bouwer, though some support groups have started raising funds for them, but his parents’ main concern is that their child is no longer suffering the horrendous fits that blighted his life.
She added: "God’s mercy and grace was already so big in this little boy that we can only hope for the future."