A cheerfully decorated room in the intensive care section of Potchefstroom’s Medi-Clinic has been home to NIKAYLA VILAS (3) since she was nine months old.
A terminal disease has steadily destroyed her muscles - she can’t walk, move or swallow. She’ll never splash in a pool or eat hamburgers or chocolates. Without a respirator and a feeding tube she’d be dead in an hour.
Six weeks after her birth her mom, MARYKE (36), realised she didn’t kick as babies should. Three months later Maryke took her to a neurologist who determined that Nikayla suffers from the most severe degree of spinal muscular atrophy, also known as Werdnig-Hoffmann syndrome. It doesn’t affect mental ability but paralyses the body.
It affects one in 20 000 babies and one in 40 people carry the gene responsible for the disease. Both parents must be carriers for a child to be affected; even then there’s a one in four chance it will happen.
Nerve cells carrying signals to the muscles are gradually destroyed; the only muscles not affected are those of the eyes. Most sufferers don’t live more than two years.
Maryke has spent almost every day for three years at Nikayla’s bedside and is resigned to the little girl’s fate. “I’m ready for her to go. I know every day brings us closer to her death but I still come to the hospital every morning. I don’t want to have any regrets later or think I should have done this or that differently.”
She reads and sings to Nikayla and they watch DVDs together. “I’ve brought her flowers and leaves so she can see and touch them. When people go to the coast I ask them to bring back sea sand and shells. That’s the only way she’ll know what they are.”
Meanwhile Maryke and her husband, Sean (41), are preparing for a new arrival. Maryke is 19 weeks pregnant and they’re hoping for a healthy child.
“We were over the moon when tests showed there’s a 95 per cent chance the baby won’t have the disease. Now we worry about the remaining five per cent.”
They’re waiting for the results of further tests. “I’m too far along to have an abortion but I’ve made peace with whatever might happen.”
- E-mail Maryke at marykevilas@vodamail.co.za.
