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Changing nappies and sitting up all night with your child is something most parents put behind them after the first few years of parenthood, but it’s part and parcel of Pieter Henning’s (61) daily routine as he cares for his disabled teenage stepson.
Pieter (61), who lives in Hammanskraal, has been caring for 14-year-old Marthinus Viljoen after he and the boy’s mother divorced in 2010.
Marthinus has a rare condition called Angelman syndrome, a developmental disorder that’s left him completely dependent on his stepdad. Pieter, a manager at a local internet café, has employed a nanny and his job is flexible, he says, so he can juggle work and caring for his stepson.
When Marthinus was born, his feet were bent and misshapen and he had two surgeries to correct them but he’s still unable to walk. He crawls around the house or uses his special walking frame.
In 2018, the Quinton van der Burgh Foundation – founded by the billionaire mining magnate – presented Marthinus with a Buddy Roamer walking frame worth R68 000, which allows him to experience what it’s like to walk.
“Seeing him crawl at the age of 14 makes me sad,” Pieter says. “So I strap him up and he walks. We do take good care of his knees too by using cream to keep them soft because he’s growing and getting heavier. We make sure all surfaces are always clean so that he doesn’t get any cuts or splints in his knees.”
Growing up, Pieter had a younger brother with Down syndrome who died when he was 21 years old.
When Pieter married Annatjie Viljoen (45) in 2006, he and Marthinus, who was then two-months old, formed an instant connection, he says.
“My brother looked like Marthinus did as a baby and we bonded hugely,” he tells YOU.
When his four-year marriage to Annatjie ended, his love for Marthinus did not fade, and he didn’t hesitate to take up his ex’s request to look after her son.
“It was the best day of my life,” he says. “She told me she wouldn’t be able to cope with him on her own, because as he grew older he would get heavier and caring for him wouldn’t be easy. I understood that – not everyone can cope with a disabled child.”
Although he hasn’t officially adopted Marthinus yet, the teen lives with Pieter permanently in his two-bedroom home.
“I don’t know where his father is,” Pieter says. “But his mom will never come to take him from me. I send her photos now and again and updates once in a while. We’ve signed documents so I can receive the disability grant of R1 870, which helps me to take care of him.”
Pieter says he spent much of his life’s savings investing in Marthinus and he worries who’ll take care of the boy when he’s no longer around. That’s why he’s spreading the word about Angelman syndrome so more people can understand it and hopefully someone will be willing to care for Marthinus one day.
“Angelman is one of the rarest syndromes and one of the hardest for people to understand. But people with the condition are human too. Strangers can stare but they should also ask questions so they can know what’s going on.” Marthinus can say only four words – mama, daddy, grandfather and grandmother – and Pieter smiles every time he hears himself being called “Daddy”.
“My son enjoys playing outside like any ordinary kid,” he adds. “I take him to the pool sometimes which is good for exercise and fun for him. He’s going into puberty now and I have to research what to expect next.”
There is lots of love and positivity in their little home, Pieter says.
“My son’s unconditional love and smiles bring joy into my life. He helps me stay positive when I’m down because he’s always happy and content with his life. He appreciates the small things and he doesn’t care about material things.”
People should learn that having a disability is not a disease, Pieter says. It’s just a different way of life.
People with AS often smile and laugh a lot and have excitable personalities. They’re expected to have a normal lifespan although there’s no cure.
The syndrome is named after Dr Harry Angelman, the doctor who first identified it in the 1960s.
Women with a family history of AS can undergo prenatal genetic testing but in 10% of cases it isn’t possible to detect the condition.
EXTRA SOURCES: mayoclinic.org; angelman.org
