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28 October 2014
Inside Out: Surprising Stories, Familiar Places

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ÌýÌýÌýInside Out - East: Monday 28th October, 2002

LIFE WITHOUT SIGHT

Bernadette in the garden
Bernadette Reddington

Imagine giving birth to a child whose face you will never see. This is the ordeal that Bernadette Reddington has faced not with one, but two of her children.

Bernadette suffers from a very rare eye condition called Aniridia. It means that the iris of the eye is completely missing.

The condition effects about 1 in 90,000 people, yet amazingly, Bernadette’s husband Marcus has recently been diagnosed with it too.

Bernadette and Abbie-Rose
Bernadette and her family live an independent life

She spent her childhood with limited sight, but not a woman to give up easily, Bernadette had over 30 operations on her eyes in an attempt to improve her vision. Tragically, the final operation left her completely blind.

Inherited disease

Aniridia is a genetic disease and has been inherited by two of Bernadette’s three children; five year old Abbie-Rose and nine year old Christopher.

With four out of the five family members registered blind, you may be forgiven for thinking that daily life would be practically impossible for the Reddingtons. Bernadette will gladly prove you wrong.

Katie with a plant pot
Katie is the only sighted member of the family

Six year old Katie is fully-sighted and helps as often as any six year old would. Bernadette doesn’t like to rely too much on her daughter, especially when Abbie-Rose and Chris are more than willing to pull their weight too.

Bernadette employs several part time helpers who read her mail and offer help around the house. Aside from that, the Reddingtons live completely independently. A feat that some social workers find hard to believe, but Bernadette defends vehemently.

"I’ve never had to take my children to Accident and Emergency. Probably because my awareness is heightened because I have got one of the main senses missing."

A day in the life

Inside Out looks at everyday tasks and Bernadette’s strategies to tackle them without the gift of sight.

Dressing the children

The children drop a bombshell, informing Bernadette they must wear red white and blue for school. Katie helps select items, Abbie-Rose and Chris, have limited sight so they help too.

Making a cup of tea

Bernadette uses her fingers to measure the water level in the cup. She also relies greatly on hearing. "You can tell when the cup is nearly full because the sound of the water changes pitch," Bernadette informs us.

Cooking

Bernadette relies on taste more than most cooks. This does have its downfalls though. "I’m always getting a burnt mouth." Common sense also plays a big part, knowing how long things take to cook. Smell, consistency and texture of the food also indicate how well cooked it is.

Reading mail

Bernadette has part time staff who read her mail. She has a close relationship with her staff but it does mean a loss of privacy. "You know more about my medical history than I do," jokes Bernadette to helper Theresa.

Bernadette has a fierce sense of determination.

"I think I’m bloody minded, I make things hard for myself…. There is so much injustice and lack of awareness. I sometimes think that I was put on this earth to make people think."

Coming to terms

Chris at the computer
Chris and Abbie-Rose have limited vision

Everyone has their limits though and for Bernadette never being able to see her children is a difficult prospect to come to terms with.

"I’ve never seen Katie and Abbie. It didn’t strike me until Katie was three days old. I sobbed my heart out….at least I had seen Chris, I can’t imagine not seeing the girls forever."

Seeing Katie and Abbie may not be as unfeasible as once thought. In summer 2002, the bionic eye became commercially available. A tiny camera is connected by electrodes to the brain. At the moment users may only see moving shapes, but the camera is still in development.

As ever, Bernadette is very positive and will be the first in the queue if research is needed.

Bernadette playing with Katie and Abbie-Rose
The prognosis for Chris and Abbie-Rose looks ever more hopeful

The future for Abbie-Rosie and Chris seems ever more hopeful. Both are carefully monitored for glaucoma and cataracts which often go hand in hand with Aniridia making their prognosis more hopeful.

Bernadette lives in hope that future techniques may be able to give her some vision, however limited.

Marcus regularly films the children, capturing and preserving their childhood in the hope that Bernadette may one day be able to relive those moments.

Lets hope that day comes soon.

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