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 offyou 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.
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