Lukas Etsebeth (4) can’t walk or speak – and after countless tests and doctors’ visits, his parents are no closer to knowing what’s wrong with him.
Lukas and his parents, Janine (35) and Koos (37), live in Roodepoort, Gauteng.
The family has travelled all over the country to various specialists in search of answers but without much success. Four years ago, Janine had to abandon her doctoral studies in teaching to look after Lukas full-time.
“I’d had a normal pregnancy, and Lukas looked healthy and normal when he was born. At six weeks [after his birth], the doctor sent us to have a head scan done because his head looked abnormally large. That’s when we started noticing the first abnormalities – there was fluid in his head,” Janine tells YOU.
Lukas didn’t develop like other children. He’s still unable to speak and walk, and his mom has to process his food otherwise he’ll choke on it. He has an abnormally narrow airway, and a part of his brain is underdeveloped.
“We’ve taken him to more than 15 specialists in the past four years. He still has an MRI scan twice a year. But we don’t know what’s causing his condition and whether he has some sort of illness,” says Janine.
A few months ago, Lukas was hospitalised when he was diagnosed with swine flu. He also developed pneumonia.
“We didn’t think he’d make it,” Janine recalls.
He’s since been diagnosed with cerebral palsy and is injected with Botox to relax his hands and feet. He wears back and leg braces to straighten his legs and spine.
Though he can’t walk, he’s able to propel himself on his tummy, Janine says.
Koos, who works for a construction company, is the breadwinner.
Lukas has speech therapy and physiotherapy weekly. His parents would like to start him on occupational therapy, but they can’t afford it right now.
“Though we have medical aid, his therapy isn’t covered. He weighs 24 kg and I’m really struggling to pick him up and carry him but we can’t afford a wheelchair.”
Janine is convinced Lukas will continue making progress.
“He’s improved so much since he started speech therapy. Eighteen months ago he wasn’t communicating at all. Now he’s trying to communicate in his way. He’ll be watching something on the tablet and when the story is finished, he’ll take my hand and [gesture to] me to put it on again,” she says.
Janine can’t leave Lukas alone even for a moment as he starts screaming hysterically when she isn’t near him. “It’s tough,” she says. “But on Saturday when Koos took him to his [therapeutic] horse-riding lesson, I was home alone. After a while the house was so quiet that I missed him.”
Janine and Koos have sent DNA and blood samples overseas for testing but all the tests came back normal.
“It cost more than R50 000,” she says. “We’ve decided we’re done with testing to try to find out what’s wrong. Now, we’re just trying to keep him healthy.”
Janine admits she gets sad and disheartened sometimes when she sees other four-year-olds running around and climbing trees. But she can’t imagine a life without Lukas.
“We’re hoping to find him a good school because I know the interaction will do him good and help him develop.”