Every morning 14-year-old Lindokwakhe Vilakati, who suffers from muscular dystrophy, has had to be carried to his chair at school by his father, where he had to stay until his dad returned from work to pick him up.
Muscular dystrophy is a degenerative hereditary disease characterised by progressive weakening and wasting away of the muscles. Lindokwahe’s condition has rendered him completely immobile and proved a considerable challenge for the Vilakati family, who have not been able to afford a wheelchair for the youngster and have always had to carry him to wherever he had to go.
This, however, all changed last Thursday with the donation of an electric motorised wheelchair to Lindokwakhe from ’good Samaritans’, Herman and Chantal Sauerman of Johannesburg, whose son Brady suffers from the same debilitating medical condition.
After being taught by the Sauerman family how to operate the chair, Lindokwakhe, who hails from Swaziland, was soon whizzing up and down the corridors of Netcare Sunninghill Hospital, where he was admitted last week for treatment for congestive heart failure, which is often a complication of advanced muscular dystrophy.
“I don’t think that there was a single dry eye among the doctors and hospital staff who witnessed the handover of the wheelchair to Lindokwakhe,” says paediatric cardiologist, Dr Kenny Govendrageloo, who practises at the hospital and has been involved in the medical care of both boys. “It was an incredibly moving occasion. Lindokwarhe and his mother, Sitakele Vilakati, were delighted with the life-changing donation, which will give the young man much greater freedom of movement and independence.”
Dr Govendrageloo explains that Brady Sauerman, who is one of his outpatients, was taken to Netcare Sunninghill Hospital by his parents for a check-up late last week. “At the time I mentioned to Brady’s parents that a boy from Swaziland was also being treated at the hospital for muscular dystrophy. When Mr Sauerman heard that Lindokwakhe did not have a wheelchair, he told me that Brady had a spare one that he no longer used, as it was not the right fit for him. Without a moment’s hesitation, the Sauermans expressed their desire to give their spare chair to Lindokwarhe.”
After Brady’s appointment with Dr Govendrageloo, the Sauermans went home and topped up the wheelchair’s battery acid, charged the batteries, and had the armrests reupholstered, before returning with the chair to the hospital later that same day.
“Electric wheelchairs are expensive technology costing in the region of R35 000. This donation by the Sauerman family was an incredible act of kindness and compassion and we are grateful to them for having assisted Lindokwakhe in such a meaningful and life-changing way.”
For Brady’s father, Herman Sauerman, giving Lindokwakhe his son’s spare motorised wheelchair was the obvious thing to do.
“Brady and Lindokwakhe suffer from the same type of muscular dystrophy, and we know how incredibly disabling this condition can be and how frustrating it is for the young people who suffer from it,” he explains. “Their muscles deteriorate to the point where they are no longer able to be mobile. We hope that this chair will enable Lindokwakhe to be more independent and make life a little easier for him and his family.”
Dr Govendrageloo, says that there are different types of the disease but that Duchenne muscular dystrophy, which the two boys suffer from, is the most common. Its symptoms first become evident in childhood, usually between the ages of two and three.
“Muscular dystrophy causes a deterioration in the muscles to the point where many sufferers lose the ability to walk and they may develop trouble breathing and/or swallowing. It can also, as in Lindokwakhe’s case, cause the heart muscle to fail. There is no cure although therapies can help to manage the symptoms.”
“We need to create greater awareness among parents of this uncommon but debilitating disease and its symptoms, as early treatment can also assist in slowing its progression,” observes Dr Govendrageloo. “Signs and symptoms of Duchenne muscular dystrophy may include children having poor balance and suffering frequent falls, having trouble running and jumping, calf deformation, difficulty getting up from a sitting or lying position, a waddling gait, curvature of the spine and the back, as well as experiencing muscle pain and stiffness.”
When Lindokwakhe was admitted to Netcare Sunninghill Hospital early last week, he was placed under the care of paediatric neurologist, Dr Tiziana Aduc. He will be returning home to Swaziland soon after having received treatment for his congestive heart failure.
Netcare Sunninghill Hospital general manager, Pieter Louw, says that the staff at the facility have been moved and inspired both by Lindokwakhe’s bravery during his stay at the hospital and by the Sauerman family’s spirit of giving.
“The gift of this wheelchair to a teenager who has for years been in desperate need of it, shows the goodwill and kindness that is to be found among people,” he concludes.