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Wednesday / June 29.
HomemifeatureHow Layla Sees Christmas

How Layla Sees Christmas

To hundreds of millions of children around the world, Christmas is a time of joy, excitement and anticipation. It’s a time of family gatherings and interactions and should also be a time of good deeds and giving. For many kids around Australia, Christmas is still a time of excitement and joy, but it’s a concept that they can only imagine… because they are either blind or have low vision. This Christmas, Vision Australia has made its mission to enhance the lives of those kids who have lost the sense of sight that most of us take for granted.

Five-year-old Layla Bodnar doesn’t think she’s any different to any other kid her age.

She has a loving mum and dad, a cheeky little brother Vaughn and is so looking forward to the arrival of Santa Claus in her household.

Layla is the face of this year’s Christmas appeal by Vision Australia in its attempt to raise AUD$1.1 million to provide playbased therapy that encourages children to explore and build awareness, confidence and ultimately independence.

“Layla has no idea she is different so nothing she does is different. She gives everything a go…”

Layla’s angelic, smiling face is on thousands of letters sent out to the public asking for donations and explaining her situation, the same as so many other Australian children.

Next year, Layla begins school and she is as prepared as she could be thanks to her devoted parents Max and Konji and the dedication and help of Vision Australia.

The letter explains how for Max and Konji, their first child was a “dream baby” who slept well.

“I thought it was fabulous that Layla barely opened her eyes,” says Konji. “Then at six weeks it all went downhill fast.”

While changing her nappy, Konji noticed Layla’s right eye looked unusual.

“With the light shining on it I could see it was very cloudy, but I thought that with eye drops it would be fine.”

Unfortunately, Layla’s eye condition was infinitely more serious than her parents ever imagined.

“The ophthalmologist looked at her eyes and instantly turned grey,” Konji recalls.

“He said it was extremely likely that Layla was blind in one eye, possibly both.”

Layla was diagnosed with Familial Exudative Vitreoretinopathy (FEVR), a condition that causes abnormal blood vessels to grow causing scar tissue, retinal detachment and ultimately blindness. The condition left Layla blind in one eye and affected detailed vision in the other.

“We were told there was nothing that could help her vision. It was devastating,” says Max.

Learning to Cope

The couple went home with heavy hearts. How would Layla learn about the world, take her first steps or play safely?

“We didn’t know what her life would be like or where she’d be. We had no experience of blindness,” says Konji.

Max and Konji found that the guidance and reassurance offered by Vision Australia was of immense comfort as they struggled to come to terms with the lifechanging diagnosis.

Like any parents, they didn’t want their child to miss out on any of life’s joys or future opportunities such as study and employment, which continue to be huge obstacles for many Australians who are blind or have low vision.

The day after Layla was diagnosed, Vision Australia contacted her parents, who were relieved to discover there were answers to their questions and a range of specialists to support them in their time of need.

Among them was Libby, an Early Childhood Educator who regularly visited the family’s Melbourne home to teach Max and Konji how to develop Layla’s awareness of the world and encourage movement.

“In that first year Libby was our backbone,” says Konji. “She taught us there are other ways Layla could learn and connect. Vision Australia continually provided toys to use and suggested activities and exercises.

“Even at eight weeks I’d tell her about the colour of the sky, the shape of the trees and cars. I described everything in detail so she could create a picture in her mind.

“That first year was scary and wonderful at the same time. At times it was dark, but I want other parents in the same situation to know that life does become normal.

“Layla sat, crawled and walked a little later than most kids, but she did it,” Konji recalls. “With Vision Australia’s help, the milestones we never thought would happen, happened.

“They continually provided toys to use and suggested activities to encourage play. We devoted all our time, resources and efforts to Layla. It was tough on her and us, but we never gave up hope.”

Research

While Konji was devoting her days to encouraging Layla to play and explore, Max began researching his daughter’s eye condition and investigated every possible way to assist Layla.

For the first year, Layla was anaesthetised every three months so doctors could monitor her eyes for change. For the second year, the examinations were carried out every four months. Now they are every six months.

“I don’t know what we would have done without Vision Australia,” says Max. “They help in any way they can, not because they have to but because they want to.”

Layla’s condition remains stable for now, but her parents remain guarded as FEVR can become active again and cause the little sight she has now to deteriorate further.

Today Layla enjoys swimming, gymnastics and ballet, just like so many other five-year-old girls.

She has also begun using a magnifier to help her read and look at pictures and she has even managed to draw her vision of Christmas (see accompanying picture).

It’s been a tough journey for Layla and her family and there will no doubt be further challenges ahead.

“Vision Australia gave us, and continues to give us, the necessary tools and advice and we used them,” says Max.

“Now our daughter leads a far more active and fulfilled life than we ever thought possible.”

As the brochure says: “At Vision Australia, we don’t want any child to miss out on the learning and play opportunities enjoyed by their sighted peers.

“But we need your help to ensure more children like Layla are equipped to lead active and independent lives.

“A high level of expertise and intensive one on-one support from a range of specialists, including Early Childhood Educators, Orientation and Mobility Instructors, Physiotherapists, Occupational Therapists and Librarians, is needed to help kids who are vision impaired to achieve their potential. Providing the life-changing Child’s Play Program requires significant funds, which is why we need your support.

“Your gift today will enable children who are blind or have low vision to experience all the happiness and joys in life”.

Footnote: The annual Carols by Candlelight will be the highlight of this year’s Christmas appeal by Vision Australia. It will be held at Melbourne’s Sidney Myer Music Bowl in the gardens of King’s Domain Park on Christmas Eve. Tickets are now available via Vision Australia’s website. Go to: www.visionaustralia.org/carols

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