WALKING TALL
Four members of this family suffer from a hereditary disease – but that hasn’t stopped them pushing the boundaries
THE two Swanepoel sisters line up, ready to race. But as Lara (7) sets off you can see every step is a strain. Her sister, Mia (8), gamely allows her a head-start but as soon as she joins the race, she’s off to a sprint and easily overtakes her younger sibling.
As they cross the finish line both girls are laughing. Because win or lose, what’s happening here is nothing short of a miracle. Not so long ago doctors warned that neither of them would ever be able to walk unassisted.
But this gloomy prediction didn’t stop them from hoping and dreaming. Ever since she was a little girl Mia had just one wish: “I want to run,” she told her mom, Mandie. At that stage the only way Mia was able to move was with a walking frame and she hated how the contraption limited her mobility. But since undergoing a major operation two years ago she was delighted to be able to set the walking frame aside.
For a while after the operation she had to use crutches but she now feels confident enough to walk unaided most of the time. Like today – she’s playing in the garden of their home in Sinoville, Pretoria, with Lara and their little brother, Henog (5).
Mia, Lara, Henog and mom Mandie all suffer from hereditary spastic paraplegia. This means the muscles in their lower limbs are shortened and their legs are stiff and difficult to bend, which affects their mobility.
Lara’s wish was to be able to walk like her sister, and in January she was able to take her first step unaided, having undergone surgery last year. It’s still hard going but once Lara’s gained momentum she can walk for quite a while. Otherwise she takes someone’s hand or uses her walking frame.
Mandie (34) doesn’t walk unassisted at all and gets around on a motorised chair. Yet despite the challenges the mom and her three brave children face they don’t believe in feeling sorry for themselves. Only occasionally, when she talks about her kids’ disability, Mandie’s eyes well up.
“When they were diagnosed I blamed myself – they got it from me. I know you shouldn’t think like that but I wish I could do more to make things easier for
Mthem. People don’t think it’s that bad because the kids can do everything but they don’t realise how much effort it takes for them to walk,” Mandie says. ANDIE was young when doctors told her parents she’d never be able to walk and would be in a wheelchair all her life. They also predicted she’d never be able to have children.
But this didn’t deter her. She’s devised a way to walk by swinging her legs – though she needs crutches or something similar to support herself.
“I walk because I want to walk,” Mandie says.
She completed primary and high school on crutches. When she went to university to study to become a teacher her parents bought her a motorised three-wheeler. She now teaches at a private school in Pretoria.
Two years after she married her husband, Jansie (38), Mia arrived.
When at 16 months their child still wasn’t walking they took her to the same orthopaedic specialist who’d treated
Mandie, and spastic paraplegia was diagnosed. “It just wasn’t something I wanted to hear.”
At that point Mandie was pregnant again and they desperately hoped their second child would be spared. When Lara was born she was diagnosed with a brain tumour which caused her to have fluid on the brain. She was just a few weeks old when the tumour was removed.
When she too failed to reach her developmental milestones the couple went back to the doctor and received the same diagnosis: spastic paraplegia.
And with Henog it was the same bad news.
Although the condition resembles cerebral palsy the difference is it only affects the lower body, Mandie explains.
“It’s only their legs that are a problem. The rest of their bodies are totally normal. The children are hyper-intelligent.”
And when it comes to raising them she’s been determined not to allow her own disability to get in the way. When they were babies she’d stand with one hand on the wall so she could carry them on her hip, just like any other mom.
And when she needs something from a high cupboard she’ll stand against the cupboard and help Mia up to get what she requires.
Every afternoon she fetches her kids from school herself in a vehicle Jansie customised for her.
Mandie says her husband is patient and helps where he can. But in the same way she learnt to do everything for herself, she’s raising her children to value their independence.
“I can’t do everything for them. Even when they were little I tried to teach them to do things for themselves because there’s not always going to be someone around to help them,” Mandie says.
Mia has her mother’s sense of determination and wanted to walk perfectly from the start. Now she “jogs” from her house to the corner every day – a distance of about 200 m.
Before, Lara didn’t care about how she walked as long as she could move. But now that Mia’s walking she wants to walk perfectly just like her sister.
Mandie admits that mornings are a bit of a struggle. “After we’ve slept our legs are very stiff. We can’t just bend them,” she says.
With a great deal of patience they have to slowly bend their legs with their hands. It takes about a half an hour before their legs loosen up a bit and become less sore.
Then it’s into the car. The kids get dropped off at the mainstream Die Poort Primary School before Mandie heads off to work.
Every year at least one of the kids undergoes a big operation. There’s either a groin muscle that needs to be stretched or a tendon that has to be lengthened. Or one of them needs screws put into their feet.
Lara underwent major surgery last year which saw parts of her lower leg being broken to stop her feet from turning inwards. But now she’s developed a problem that causes her feet to turn outwards and needs surgery to correct it.
The family’s medical aid won’t cover the prosthetics which will be implanted into her feet – so now it’s up to her parents to raise the R23 000 needed, otherwise her feet will continue twisting outwards and eventually she won’t be able to walk at all.
But for now the Swanepoel siblings are just getting on with their lives. They run around – walking frames, crutches and all – and jump on trampolines. Little Henog can even hit a respectable putt with a golf club.
At school the girls take part in athletics. Every year the Grade 1 class has a race in which everybody participates.
Mia and Lara both took part, using their walking frames. It didn’t bother them one bit that they came last – they were just so thrilled that they were able to finish the race.
“They carry on as if they’re normal children,” Mandie says proudly.