T THE FUTURE
FIGHTING FOR SURVIVAL Shortly after Emily’s first birthday, she was officially diagnosed with diplegia, a spastic form of cerebral palsy that affects her legs. “The brain sends messages to the muscles to contract and relax at the same time,” explains Cathy. This leaves the affected muscles abnormally stiff, or spastic.
In Emily’s case, the cerebral palsy (CP) was caused by damage to the white matter of the brain – an injury called periventricular leukomalacia (PVL). PVL can occur in premature infants who receive ventilation in NICU, although nobody knows for sure how Emi’s injury happened.
The prognosis was devastating: Emily might never walk.
But the experts never reckoned with the little girl’s stubborn determination. According to Grant, she’d been obsessed with moving and walking from a very early age. She sat, rolled and leopard-crawled. Then, two days before her second birthday, she took her first independent steps. through to the muscles.
The Surteeses started raising money to go to America. But the more research they did, the more they found that the best people for the rhizotomy were right here in South Africa, in Cape Town. (The pioneer of modern SDR was a South African, Warwick Peacock.)
While this was great news, it came at a price. Unlike their American counterparts, the South African surgeons won’t operate on children under 5. They want to give the young brain a chance to develop its own pathways first, before they permanently sever nerves that might have helped in the long run.
Cathy was gutted. “Emi could’ve been ‘cured’ by now. Now we were told to wait another three years.”
While they wait, Emily is receiving several interventions to help her walk and move better. “I go to Liza and do exercises,” Emily herself explains. “Mommy says I must go, because I
he moment you meet Emily Surtees (3) from Cape Town, her joyful personality sweeps you off your feet. She’ll politely demand to see your nail polish, bring you “tea”, chase after her brand-new cat and tell you about her twin.
“We scored a luck with her personality,” reckon her parents, Grant (43) and Cathy (44). But as they talk about Emily’s premature birth, the death of her twin brother, and her diagnosis with cerebral palsy, you see much more than just luck. Instead, you leave with a great sense of hope. Meanwhile, Cathy and Grant heard about a surgeon in America who could “cure” children with CP through an operation called a selective dorsal rhizotomy (SDR).
During SDR, the nerves responsible for the spastic signals are severed, so that only the normal messages get should wear my special boots.” Apart from her regular physiotherapy and ankle-foot orthotic braces, Emily also receives botox injections, which help her spastic muscles relax. She’s also had surgery to correct a squint. Emily attends a mainstream preschool that runs an early intervention programme for children with special needs.
The Surteeses still face many challenges, such as the extremely high cost of the treatments, many of which aren’t covered by medical aid. And despite the hope that the rhizotomy will give her as normal a life as possible, there are no guarantees. “You just can’t predict the future,” says Grant.
But Cathy is filled with hope. Her one big wish for her daughter is this: That Emily will be able to look at her cerebral palsy and say: “So what?” “And you know what? I kind of think she will.” YB