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Little Girl, Big Dreams – Shianne’s story

June 11, 2013

Three-year-old Shianne lives in darkness. She cannot see the beauty of a sunset, or twinkling stars in a night sky.

Shianne, was born with a rare genetic disease, that affects 1 in 80,000 children. “At Shianne’s 6-8 week check-up the paediatrician noticed that Shianne’s eyes were darting backwards and forwards, a movement called nystagmus,” said Colleen, her mum. “That night I remember not wanting to put my little Shianne to bed. I just wanted to hold her tight and reassure her – and myself – that everything was going to be OK. But our next appointment brought devastating news. “Your daughter has a condition called Leber’s Congenital Amourosis. She cannot see and there is no cure.” I just sat there and cried.

Imagine how she must have felt as the world suddenly went dark for her baby girl.

“There were so many things I realised Shianne wouldn’t be able to do – all the things she would miss out on. Counting the stars in the night sky, riding a bike through a park or playing hide and seek with her brothers… in a moment, it hit me that she wasn’t going to be able to do any of these things,” she said.

But what Colleen didn’t count on was the incredible spirit, tenacity and determination of her little girl. This has been a mum’s journey as well, which Colleen has painstakingly documented on a dedicated website,

“I’ve had to stop thinking about what she will miss out on – and focus on what she will be able to achieve,” said Colleen. At the age of just three, Shianne has already achieved so much. But this little girl still has a long, long road to travel. Soon she will be ready to attend school. But now Shianne urgently needs white cane training together with intense orientation and mobility skills to prepare for school.

Shianne is one of the youngest clients Guide Dogs has ever had.
Vision impairment can severely affect a young child’s development. For a sighted child, crawling, standing, walking, eating and playing come together gradually, with the assistance of vision. For Shianne and other children with vision impairment, even the simple movement of just holding up the head must be encouraged – for there is nothing to see when they look up.

Weekly sessions are crucial right now as they prevent her from missing significant developmental milestones due to lack of vision.

The world is so much bigger than Shianne realises.
“One of the most difficult concepts to explain to Shianne is that the world doesn’t end where her cane ends,” said Abby, her Orientation & Mobility Instructor.

“Right now we are focusing on helping Shianne navigate stairs, as well as preparing her for walking independently in bigger open places. We must prepare Shianne for going to kindy, then school.

Every session Shianne misses is a step backwards
Shianne’s weekly training is costly – and funding is limited. Your help will ensure this bright, determined little girl has every opportunity to achieve her dreams. Your kind gift today can secure more training for Shianne.

“I will do it myself, Mum!” For so many parents, this phrase brings incredible pride – and a tear or two. For Shianne’s family, it means the world. Shianne wrestles with her big brothers, plays with her dolls, dances to the Wiggles and asks endless questions – questions that some days, are heartbreaking. Imagine trying to explain to a visually
impaired child what an elephant or a dog or cat looks like – or even Cinderella.

“I worry about kindy and school… about her being alone in the world.”
Right now Colleen is there for Shianne most of the time. In two years, everything changes when Shianne goes off to school. She will need to go to school herself, find her own way across a busy schoolyard, into classrooms, up and down steps.

Shianne is learning how to cope with these unfamiliar situations. “I have to resist taking her hand to guide her when we are out. Shianne has to learn to do this herself, using her cane. It’s very hard to watch your little girl struggle – but she always gets there in the end,” said Colleen. This little girl has big dreams – and you can help her reach them.

Shianne needs to continue her developmental training and white cane training so that she can walk through the school gate in her freshly pressed uniform, feeling excited and proud just like any new school girl. Your support today will make sure she achieves this goal – and so much more.

Thank you to the people who helped Shianne.


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