Tak­ing each day as it comes

Auckland City Harbour News - - NEWS - By MONICA TIS­CHLER

Sym­pho­nya Tu­rua sits silently in her cus­tom-built sup­port­ive frame as her three sib­lings laugh and play around her.

The 3-year-old tot can’t join in but the ex­pres­sions that spread across her face in­di­cate she’s tak­ing in all the ac­tion and ac­tiv­ity.

Sym­pho­nya was born with a rare con­di­tion called lissencephaly, or smooth brain.

Her brain has no folds and was caused by nerve cells not mov­ing to their per­ma­nent lo­ca­tions dur­ing the early stages of preg­nancy.

The young­ster can’t walk, talk or sit up, and re­quires round-the-clock care.

Mum Lesina Tu­rua, 35, says learn­ing of her daugh­ter’s con­di­tion was ‘‘dev­as­tat­ing’’.

‘‘I thought maybe I had done some­thing dur­ing the preg­nancy – I was very emo­tional,’’ she says.

‘‘But it wasn’t a ge­netic trait, just some­thing ran­dom that hap­pened.’’

Sym­pho­nya’s one of about 20 Kiwi chil­dren with smooth brain and upon her di­ag­no­sis, Tu­rua and her hus­band Karika strug­gled with the lack of sup­port and in­for­ma­tion avail­able lo­cally.

They took to com­mu­ni­cat­ing with other fam­i­lies, some from over­seas, via so­cial me­dia sites like Face­book.

The pair hope to start up New Zealand’s first sup­port group where other fam­i­lies af­fected by the con­di­tion can com­mu­ni­cate and of­fer ad­vice.

‘‘It will be a

place

for par­ents to vent, sup­port each other and share what works and doesn’t work for them,’’ Tu­rua says.

‘‘They might be do­ing some­thing that we haven’t tried and that would re­ally ben­e­fi­cial Sym­pho­nya.’’

Spe­cial­ists ini­tially said Sym­pho­nya would live to be about two years old but med­i­ca­tion and ad­vanced equip­ment has in­creased her life span to about 10 years, Tu­rua says.

Sym­pho­nya is fed liq­uids and daily med­i­ca­tion through a feed­ing tube and re­quires reg­u­lar speech lan­guage, physio and oc­cu­pa­tional ther­apy.

At­tend­ing spe­cial needs day­care Ho­mai is one of her favourite ac­tiv­i­ties.

The Tu­ruas are tak­ing each day as it comes and are en­joy­ing ev­ery mo­ment spent with Sym­pho­nya.

‘‘She’s al­ready de­fied the odds and at the end of the day we’re huge be­liev­ers in just sim­ply lov­ing our kids,’’ Tu­rua says.

‘‘It makes a big dif­fer­ence to their qual­ity of life.’’ be for

Photo: MONICA TIS­CHLER

Lov­ing sup­port: Sym­pho­nya Tu­rua, 3, pic­tured with mum Lesina, has a rare con­di­tion called smooth brain.

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