WHEN Greenwood Park resident, Nicole Padayachee, was born, she weighed little over two kilograms and her body was so tiny that it could easily have fit into a shoebox. At the time, her parents did not have any real reason to raise concern over her health; after all, she had ten fingers, ten toes and ‘the most capturing smile’.

However, little did they know of the devastating truth looming in the future.

After Nicole’s first birthday she was sent to a crèche, where the principal noticed a delay in her ‘physical progress’. Not only did she struggle to crawl but could never properly walk.

Her parents rushed her to a paediatrician, who referred them to a specialist at Albert Luthuli Hospital. She endured dozens of gruelling tests and then on her second birthday was diagnosed with type two spinal muscle atrophy (SMA), commonly known as the motor neuron disease.

Fast-forward 12 years and now the young pupil of The Open Air School in Glenwood has become a role-model for all fellow SMA sufferers.
Over the years, she and her father, Jay, have not only raised funds to find a cure for her condition but have also sought to raise awareness regarding the misunderstood disease that affects one in 6 000 children in the world.

Now as she prepares to celebrate her 14th birthday on 14 March, she plans on continuing that tradition.

“People need to realised that SMA is a physical disability. It does not affect a person’s brain. I can think and speak for myself,” she said.

Jay explained that the genetic disease affects the body’s nerves, or motor neurons. A shortage of proteins causes the motor neurons in the body to die, affecting the individual’s voluntary muscles. In extreme cases it can affect the person’s breathing and ability to swallow.

People suffering with type one SMA often don’t survive past their first birthdays, he said. Research has estimated that Nicole has a life expectancy of 25.

However, Jay said they are not interested in statistics and are set on finding a cure.

“It has been a journey and while her condition is getting worse as she is getting older, we are determined to find a cure. Giving up is simply not an option,” he said. Nicole encouraged other SMA patients not to give up on themselves either.

“There may be things that you cannot do, but there may also be something that you can do that other people can’t. You might have something bad, but there is always someone who is worse off,” she said.

While she is passionate about photography, she said her main aspiration is to become a lawyer.