10 NEWS SATURDAY, JANUARY 16, 2016 HERALDSUN.COM.AU

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Celestina with mum Natalia, who is back in East Timor.

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FIXING THE FUTURE A rare congenital condition called chondroectodermal dysplasia caused Celestina problems in three main areas:

HEART Celestina had a damaged mitral valve, which Royal Children’s Hospital cardiac surgeons successfully repaired in February 2015

LEGS The top of both of Celestina’s shins were severely deformed, causing her knees to collapse into thespace. Prof Leo Donnan worked to repair the deformities in surgery in June, before fitting corrective metal frames (far left). The wiring in the frames was slightly adjusted every day, over four months, gradually helping her legs to align. Growth plates will be implanted in her final surgery later this month.

HERALDSUN.COM.AU SATURDAY, JANUARY 16, 2016 NEWS 11

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ren from developing countries,brought Celestina, critically illwith a heart defect, to Mel-bourne. After surgeons re-paired her mitral valve, it wasrenowned orthopaedic sur-geon Leo Donnan’s turn.

He knew instantly her de-formed knees and polydactyly(she has six digits on eachhand), initially thought to beunrelated to her heart condi-tion, showed a textbook case ofa rare congenital condition:chondroectodermal dysplasia,or Ellis-van Creveld syndrome.

“It was one of those mo-ments where you can go: ‘Iknow exactly what is wrong’,”Prof Donnan said.

On arrival Celestina, now12, could barely walk. Withouthelp, her deformed knees,which had already slowed hergrowth, would have con-demned her to a wheelchair.

“There’s a big defect in thetop of the shin, and the wholeknee collapses into it,” ProfDonnan explained.

In June, after her recoveryfrom her heart operation, cir-cular frames — an Ilizarov ap-paratus — were surgically

EVONNE MADDENMEDICAL REPORTER

Rebuilding CelestinaHANDS Celestinawas born with six

digits on eachhand. The extra

finger will beremoved, for

cosmetic reasonsonly, during thesame operation

this month.

Pictures: IAN CURRIE, ALEX COPPEL

TEARS roll down Celestina’sface as the nurse gently unrav-els the dressing from her legs.

Just three days before, 1.5kgmetallic frames had been fittedto the diminutive 11-year-old’sshins. For a girl of barely 20kg,they are heavy and cumber-some and — because they arefixed by steel pins piercingflesh and bone — very painful.

Yet this schoolgirl saysmerely: “Thank you.”

“You can see she is in a lotof pain, and tears are runningdown her face, but she will besaying ‘Thank you, thankyou’,” Pat Weldon, rehabili-tation manager for the Child-ren First Foundation, said.

“You could expect kids to bemiserable, but Tina is positiveand very composed. She seemsto see the bigger picture.”

For Celestina, the biggestpicture is returning home tothe East Timorese capital, Dili,to be reunited with mum Nata-lia and dad Jaime, and meetingfour-month-old sister Laniafor the first time.

On Australia Day, it will bea year since Rotary OceaniaMedical Aid for Children,which works with the RoyalChildren’s Hospital to providelifesaving treatment for child-

fitted to both legs to help alignthem for straighter growth.

Prof Donnan said like manychildren from impoverishedbackgrounds, Celestina was aperfect patient, “the most gen-tle, polite, gorgeous little girl”.

“These kids have got an in-nate toughness, this incredibleappreciation that there arepeople looking after them,” hesaid. “They are coming frombackgrounds where they don’thave a lot of opportunities, andI tell you what, these kids grabthem, in everything they do.”

St Vincent’s Private Hospi-tal physiotherapist JadeBrown, who is among thosehelping Celestina to walkagain, said: “She’s so tough andresilient that there are timeswe have to rein her in a bit.”

Children First took over Ce-lestina’s case, and funding,when she was referred to theorthopaedic team. She becameone of 18 overseas childrenunder its care last year.

During her year at its re-habilitation home in Kilmore,known as “the farm”, she hasadded English to her catalogueof languages: Portuguese, In-donesian, and her two local di-alects, Tetun and Tetun Terik.

She had lessons with staff

and volunteers, who also ad-justed her leg frames daily.

She has been teaching her-self to play piano, goes swim-ming at the local pool withvolunteers, and, according toChildren First chief executiveIrene Kourtis, has even be-come a bit of a “pool shark”.

“Tina is a very dynamic,bright, bubbly little kid,” MsKourtis said. “She just wants tolearn and she’s got a great spir-it. She’s magnetic, really.”

Later this month, Prof Don-nan will insert growth plates tothe top of her shinbones.

At just 120cm now, Celes-tina will not be tall, but theplates will help her catch up onyears of missed growth.

The sixth finger on eachhand will also be removed.

About six weeks later, morethan a year after she left Dili,and 10 months since her preg-nant mum returned to EastTimor, Celestina will go home.

No doubt she will have asimple message for those whohave transformed her life:Thank you.evonne.madden@news.com.au

EDITORIAL, PAGE 58

To donate or volunteer,

childrenfirstfoundation.org.au

Surgeons give brave little dynamo new hope

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