Thirteen-year-old Soyama Vena received a life-changing operation at the Netcare Unitas Hospital in Pretoria to restore his ability to walk - a dream come true as he suffers from cerebral palsy.
All this teenager from Gqeberha wished for was to be able to one day normally walk again. Vena suffers from diplegic cerebral palsy, a condition that impacts his lower limbs, and for much of his childhood, he was able to get around with the support of a walking frame.
However, his condition deteriorated, and he has recently become reliant on a wheelchair, which robbed him of his independence
Now, following a complex operation to address numerous complications affecting his hips, legs and feet, Vena is starting to take steps once more. According to his mother, he is standing taller than ever, both in body and spirit.
Boniswa Vena said she had been worrying for her son as she watched his mobility decline over the last year, despite doing everything possible to provide him with the care he needed.
“When Soyama was born, he was premature, but at the time, I had no idea anything was the matter. As time passed and he was missing milestones, such as starting to walk, I knew that all was not well,” she said.
With the help of her previous employers, they finally received a diagnosis of his condition and were fortunate to get Vena into a specialised school. The school provides the physical support he needs to attend class, participate in sports and express himself through art, which is his greatest passion.
While he is a naturally positive child, it was hard for him to accept that his condition was getting worse, his mother said. According to Chaniel van Wyngaard Stofberg, a physiotherapist at Cape Recife High School, which Vena has attended since Grade R, spastic diplegia is a type of cerebral palsy where the lower limbs are more affected than the upper limbs. One of its characteristics is increased muscle tone, or spasticity, which significantly impacts the ability to walk.
People with spastic diplegia tend to walk on their toes with a scissor gait where their legs turn inwards. This can lead to contractures and deformities, as was the case with Vena, which impedes the ability to walk.
But even while he was becoming more and more wheelchair-bound, Vena never gave up hope of walking again, even if it was just a few steps in therapy. Despite the challenging circumstances, he always believed in himself, Stofberg said.
On one of their regular pro bono visits to the school, a pair of dedicated doctors from Gauteng assessed Vena’s condition and agreed that he was an ideal candidate for a medical procedure to restore his ability to walk.
Offering their time and skills free of charge for his operation, the doctors and the school reached out to secure the funding to get Vena to Pretoria for this life-changing intervention.
Pieter Louw, general manager at Netcare Unitas Hospital, said that everyone along the chain rallied behind the bright young boy. Even young Vena was keen to participate in raising funds by selling artworks he had created to contribute to the expenses of the trip.
Louw said that the procedure was complex as the doctors had to break and reset Vena’s femurs, or thigh bones, while numerous muscles and tendons were extended to enable him to straighten his legs.
“This brave young boy spent a few days recovering at the hospital with us before heading back to Gqeberha for rehabilitation with his treatment team at school. He is truly a remarkable individual, and despite undergoing an intensive procedure, he remained cheerful and decidedly upbeat,” Louw said.