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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

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