The Challenges Of Living With Spinal Muscular Atrophy

Nicole Padayachee
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Nicole Padayachee is 21 years old and a final year law student at Varsity College Durban North. She lives with Spinal Muscular Atrophy (SMA) Type II.

SMA is a severe muscle wasting condition which means Nicole uses an electric wheelchair for mobility. She lives with her father, Jay, and her younger sister, Jordan, and the Padayachee family manage the challenge of living with SMA together.

Studying law is a massive undertaking for anyone, and the challenges for Nicole in dealing with the impact of SMA and the demands of law school have been significant. But Nicole has always been a strong student as well as fiercely determined and has faced tertiary education with typical intent.

‘I’m extremely tired!’ she laughs. ‘Actually, pretty much exhausted all the time. Studying law is a definitely an extra weight. Sleeping for four hours most nights isn’t easy. But I believe either you do it or you fail – and I don’t accept failure for myself. So there’s no choice but to push through!’

Nicole recently completed a week long internship at the Pather and Pather legal firm, an experience which gave her excellent insights into the reality of legal life, and where she enjoyed warm and positive interactions with everyone she encountered. She was invited back for another internship, but as much as she loved her experience there has decided to explore an invite from a different firm, in order to widen her range of experience.

After graduation, Nicole faces two years of articles, more exams and studies, and then finally a board exam and qualification. She hasn’t settled on an area of specialisation yet but has strong interests in family law and medical malpractice.

With genetic treatments for SMA becoming a potential reality in South Africa, Nicole, like most people living with SMA, has had to work hard to manage the emotional ups and downs of knowing that medical options exist which could give her a significant physical boost, but which are also not yet accessible to most patients in the country. 

‘There are things starting to happen with one treatment,’ she says, ‘and knowing things are moving I feel more positive. The emotional ups and downs can be difficult, but I trust and put my faith in Jesus Christ and I know that this will get me through to the right time, when treatment finally comes.’

Unsurprisingly, Nicole is an inspirational figure to many people – a fact which she both appreciates and takes with a pinch of salt. ‘I’m always grateful when someone looks up to me and sees me doing well, but of course for most of us with disabilities it can be a bit strange when people are inspired by the fact that you brushed your teeth in the morning!’ she laughs.

Nicole treated herself recently to a special 21st birthday present, in the form of an epic tattoo, which she designed long before her father conceded to allow her to etch the ink into her forearm as a fully fledged adult. The design elements refer to her faith and her family, and she says it didn’t hurt a bit.

‘People who live with SMA go through a lot physically, and have very high pain thresholds,’ she explains. ‘Really it was just like a little scratch!’ 

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