Celestina’s story

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My life has absolutely changed because of my surgery. Before my surgery, life was difficult. I couldn’t walk, and everything felt hopeless. But thanks to everyone that helped me, I am very blessed that I can now walk and look forward to the future”, says Celestina, 17, who is in her final year of high school and just about to sit her final year exams.

Celestina from Timor-Leste was born with a rare congenital condition called Ellis-Van Creveld syndrome. Typical characteristics of the disease are heart defects, shorten limbs and extra fingers. Celestina displayed all three characteristics.

Celestina was 11 when she was brought to Melbourne by ROMAC, in early 2015, for critical heart surgery at The Royal Children’s Hospital.

Although successful surgery meant that the issues with her heart were fixed, poor Celestina could barely walk.

Her shins were severely damaged, causing her knees to collapse into space.

Without treatment, the abnormality in her knees and shins, which had already slowed her growth, would have sooner or later condemned her to a wheelchair.

While still at hospital recovering from her operation, long-time partner of Children First Foundation (and recent Pat Weldon Humanitarian Award winner), Associate Professor Leo Donnan, spotted Celestina and knew he had to help her.

On assessment, Associate Professor Donnan was confident that he could operate on her legs to straighten them, but this would mean long-term treatment requiring surgery and then months in an ilizarov frame to straighten the bones.

Because of the daily and long-term care and physiotherapy needed, Celestina’s case was referred on to Children First Foundation. In February 2015, and she waved her parents good-bye as they headed home back to Timor-Leste, and soon arrived at our Retreat in Kilmore.

She settled in quickly and in June 2015, Celestina underwent surgery to attach the ilizarov frames to both her legs, thanks to the generosity of St Vincent’s Private Hospital and Associate Professor Leo Donnan and his team.

Celestina spent the next 12 months at The Retreat where she underwent extensive rehabilitation and learnt to walk under the guidance of St Vincent’s Private Hospital physiotherapist, Jade Brown and staff and volunteers at The Retreat.

For a diminutive 11-year-old girl of barely 20kgs, the metallic frames, weighing some 1.5Kgs and fixed by steel pins, piercing her flesh and bone – were heavy and very painful. However, Celestina never complained, she always remained determined and positive, pushing ahead with her exercises, despite the excruciating pain.

The wiring in the frames was adjusted every day, over four months, gradually helping her legs to align. Growth plates were implanted in a final surgery in January 2016 to help her catch up with years of missed growth. Surgery to remove her extra fingers also followed.

While recovering at The Retreat, always keen to learn, Celestina taught herself to play the piano and also worked hard to fine-tune her swimming technique. Though most of all, she loved the weekly education sessions delivered by our volunteers and says that is was where her passion for the English language was first ignited.

 “My dream is to get a scholarship and study English at University. I want to be an English teacher. I will work my hardest to achieve it”, concludes Celestina.

With your grit and determination, we are sure you will, Celestina!

If you’d like to help more children like Celestina access surgery and treatment that will transform their lives, please donate today.

Celestina story in video! Edited from an original video produced by Teagan Glenane.


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