LIFE
WITHOUT SIGHT | 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 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
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 lifeInside
Out looks at everyday tasks and Bernadette’s strategies to tackle
them without the gift of sight. Dressing
the childrenThe
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 teaBernadette
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. CookingBernadette
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
mailBernadette
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
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. | 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. |