“Imagine giving a Christmas gift that can make such a massive, life-changing difference.”
– Ally, Cooper’s Dad
One-year-old Cooper is a cheeky, happy little baby boy, who loves banging on his keyboard and listening to The Beatles. He’s a ‘little ray of sunshine’ to his parents, Ally and Claire. They are so proud of their son.
Cooper and his Dad, Ally
But this Christmas, Cooper will not be able to watch in delight as the tree lights up and colourful wrapped parcels pile up underneath. He will never ‘see’ Christmas like other children can.
Cooper was born blind because of an extremely rare inherited condition called Norrie disease. This cruel disease primarily affects vision, but it’s also associated with developmental delays and may also lead to hearing loss as Cooper gets older.
Cooper’s diagnosis was very tough for Ally and Claire, but your gift this Christmas will help us shine a light on inherited retinal diseases like Norrie disease. Together, we can give families like Cooper’s hope of a real breakthrough, one day.
Ally and Claire noticed something wasn’t quite right with Cooper’s sight in the first few weeks of his life. They ended up at Perth Children’s Hospital, where the new parents learned the shattering news that their baby son was blind, his retinas damaged beyond repair.
Cooper was born blind with Norrie disease
“We were pretty devastated for little Cooper,” said Ally. “But we also didn’t really know how to navigate the situation. We were having a hard enough time being first-time parents, let alone having to develop the specialised skills you need to care for a child with a disability.”
Please donate now to help fund research that could help families like Cooper’s.
A genetic legacy that can lie hidden in families for generations
Associate Professor Fred Chen
Associate Professor Fred Chen at the Lions Eye Institute, has made it his life’s work to solve the mysteries of inherited eye conditions like Norrie disease. The hospital called him in straight after Cooper’s vision loss was first diagnosed.
Thanks to supporters like you, Associate Professor Chen is currently working on finding the genes responsible for a condition called familial exudative vitreoretinopathy (FEVR), the most severe of which is Norrie disease.
It was Associate Professor Chen who discovered that Cooper’s condition was inherited from Claire, who had no idea she had FEVR or carried the mutation. Says Associate Professor Chen:
“In other inherited retinal diseases, we can identify the genes responsible in about 70 per cent of cases – but for FEVR we can only find the genes responsible for about half of people with this condition. Not knowing the cause of a condition is so troubling for the patient as it raises many questions like whether they can pass it on? Could it be associated with other diseases in the body?”
Claire and Ally are thankful for our help and guidance as they navigate a very different life with Cooper from the one they imagined.
Most of all, they are deeply grateful for the unexpected gift of support from people like you, when they felt so lost and alone after Cooper’s diagnosis.’
“We didn’t realise, before we went through this experience, just how many good people there are in the world. People who will listen and reach into their own pockets to help out.”
Associate Professor Chen’s work is one of many projects at the Lions Eye Institute that we can only progress with your help.
This Christmas, your generous gift can give families like Cooper’s answers and hope. Every dollar now takes us one step closer to the breakthroughs we are searching for.
Together we can provide better vision for all.
Donations of $2.00 and over are tax deductible.
Cooper with his Mum, Claire
