Caleb van Wyk, a five-month-old baby, has spent more time in hospital than at home since he was diagnosed with hemimegalencephaly (HME) in July this year. HME is a rare and severe brain condition in which one side of the brain grows abnormally, leading to intractable epilepsy that cannot be outgrown.

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Caleb was born on June 25, and shortly after his birth, he spent 11 days in hospital due to feeding difficulties and a minor infection before being discharged. Doctors noticed that his head was slightly larger than normal, but they weren’t overly concerned.

After returning home, he suffered multiple severe seizures and was taken back to Mediclinic.

“At first, I thought it was just wind or reflux,” his mother, Larochelle, said. “But the seizures wouldn’t stop.”

After many tests, a magnetic resonance imaging (MRI) scan and electroencephalogram (EEG) were done and his paediatrician informed the family of his rare brain disease. The doctor advised the family that Caleb will need brain surgery before he turns two, which is next year.

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They were then referred to Dr Marc Hauptfleisch at the University of the Witwatersrand in Johannesburg.

“Dr Hauptfleisch confirmed that Dr James Butler, a neurosurgeon at Red Cross Children’s Hospital in Cape Town, would perform the surgery,” Larochelle said.

This life-changing surgery, however, comes at a hefty price. The costs for his surgery, travel, accommodation and additional medical costs that aren’t covered by their medical aid add up to R200 000. The family has started a BackaBuddy campaign to help raise funds.

“Any contribution – no matter how small – brings us one step closer to giving Caleb the chance at a healthier, seizure-free life.”

Caleb has since been admitted to hospital twice more, on October 13 and 25, following continuous seizures.

He spent several days in the ICU, and once stabilised, was transferred to the children’s ward. However, he relapsed after falling ill. Caleb is being closely monitored and receives specialised medication to help prepare his little body for surgery.

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Those wanting to support Caleb’s treatment can visit their BackaBuddy site.