Doctors remove half 10-year-old's brain after he's diagnosed with 'rare, aggressive disease'

By Charlea Sieberhagen
02 March 2017

Just six months ago, Kyle was a healthy 10-year-old boy.

Now he must learn to live without the left side of his brain.

Kyle Verfaillie of Ermelo in Mpumalanga, whose left brain lobe was recently removed, was discharged from hospital yesterday.

Kyle underwent a life-threatening operation on 14 February after he started suffering seizures, similar to what is experienced by epileptics, six months ago.

After many tests he was diagnosed with Rasmussen's Encephalitis.

“The tests revealed that the entire left side of his brain had been affected by this rare but also relatively aggressive disease,” says Annatjie Bouwer, who is acting as a spokesperson for the family.

“The characteristics of this illness is that the immune system only attacks half of the brain, but the cause of it is unknown. Something acts as a ‘catalyst’ for the immune system but experts have not yet been able to figure out what that is.”

Kyle was a healthy 10-year-old and there was no sign that anything was wrong with him, so the first seizure came as surprise.

“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,” says Annatjie.

Kyle’s parents, Juanita and Marc, could barely sleep.

“They had to help Kyle during the seizures so that he didn’t end up hurting himself. He also started suffering from shortness of breath during the attacks.”

“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.”

According to Annatjie they thought that a brain operation was the only option. But Kyle’s seizures worsened. Sometimes the seizures happened two minutes or mere seconds apart and one of his seizures lasted for three and a half hours.

After that an emergency operation was scheduled to remove the left lobe of his brain.

“Valentine’s Day will never be the same for us,” says Annatjie.

The operation took 12 hours.

“The doctors SMSed us every three to four hours to let us know that they are making progress and are 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,” says Annatjie.

Marc and Juanita will hopefully be able to fly back to Johannesburg with Kyle by Saturday and then make their way to Ermelo.

“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.”

Annatjie says doctors believe after a while Kyle’s right brain lobe will take over all the functions his left lobe use to carry out.

“At the moment he is very much aware of what’s going on around him and can communicate, laugh and watch TV.”

According to Annatjie, Juanita and Marc are staying strong through this ordeal, even though they sometimes feel hopeless. They’re also concerned about the financial implications but support groups have started raising funds for them.

Most of all they’re happy that their darling child is back, and isn’t suffering any seizures, says Annatijie.

“God’s mercy and grace was already so big in this little boy that we can only hope for the future.”

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