Melissa Pretorius, an occupational therapist, works with children with physical, mental, emotional and social limitations. She meets some very special people on a regular basis, but one of them stands out.
During the course of my work, I came across a unique case. Felicity Ncube was born with Tetra-Amelia Syndrome – a rare genetic disorder characterised by the WNT3 gene mutation and a clinical presentation of an absence of all four limbs.
After much work and care by a professional team, as well as the contribution of generous sponsors, Felicity is now able to manoeuvre herself independently in her home and school environment. She was fitted for a customised electric wheelchair by Shonaquip – and I cannot describe how this device has enhanced her independence, self-confidence and ability to participate in vital childhood occupations.
I have walked a journey with her since 2014, when she was three years old. The team of professionals who care for her continually strive to provide the best for her. It has taken plenty of problem-solving, creativity and flexibility to look at her case holistically and provide her with appropriate interventions to enhance her quality of life. Even though Felicity has no intellectual limitations, the physical nature of her condition is restrictive, and risks affecting her emotional, mental and social development. It could also limit her mobility and participation in daily activities, such as eating, toileting, bathing, grooming as well as play, school inclusivity and quality of life.
However, over the past few years, she has shown amazing perseverance and adaptability. She is able to roll, sit, pull herself up to sit and “hop” forward with no assistance. She is able to draw, paint, feed herself and build puzzles in her own special way.
Felicity is also a master at completing educational activities on her tablet – which was also sponsored. She makes use of her 5-7 centimetre left “stompie” onto which a tablet stylus is attached with a universal cuff. She’s also using a visually operated computer system for learning at school.
In South Africa, the need for customised assistive technology devices (ATDs) is great, especially in the lower socio-economic populations. In my experience government institutions are poorly resourced due to the high costs of many ATDs. Most government hospitals or clinics provide basic folding wheelchairs, crutches and walkers as well as adaptive grooming and feeding aids.
Not many cater for children (i.e. smaller mobility aids), however, and it is rare to find the stock and provision of hi-tech ATDs and alternative and augmentative communication (AAC) technologies. Most therapists rely on donations or low-cost aids to assist their patients. In the private sector, medical aids also seem to cover only a limited range of devices.
Felicity will, however, require lifelong assistance, customised ATDs and support to live her life as independently as possible. The rights of people like her need to be advocated for in terms of the acquisition of ATDs to enhance their independence throughout their lifetime, from school and vocational pursuits to community and social participation.