If there is one lasting lesson that can be taken from the life of Artscape chief executive Marlene le Roux’s son, Adam, it is that support from communities and institutions for families caring for disabled children is key.
Le Roux spoke on the eve of her address at a Cape Times breakfast this morning.
Adam died at the age of 15 last Friday. He had cerebral palsy, a neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is under development.
Cerebral palsy primarily affects body movement and muscle co-ordination.
“He was an angel in our lives,” Le Roux said yesterday.
“He couldn’t talk, he was bound to a wheelchair. But we decided as a family we were going to fully accept him. Adam became part of the family, part of the parties, he was a happy child.
"We never saw him as a burden.We as a family made a decision that this child would be loved. We would not just put him in a corner. And Adam touched so many people’s lives.”
Le Roux said Adam was privileged to have love, support and medical care.
“Not all other parents have that. These children need 24-hour care. If you are poor, it is a struggle every single day.
"If you are poor and you struggle so much, there is no energy to look after yourself. We also need understanding in communities that mothers also need support,” she said.
Le Roux will donate Adam’s equipment, hospital bed, walking frames, special buggy and physiotherapy equipment to the Thembalethu School for the Physically Disabled in Gugulethu.
The story of Adam’s life must enable the public to look at disabilities differently, and understand the support needed from communities and the workplace for their care, Le Roux said.
“There are mothers who lose their jobs because the workplace doesn’t understand needing to go to the hospital, physio. I was a very privileged and blessed woman,” she said.
The funeral on Thursday at 10am is at the Church of the Transfiguration, Bellville.