A DEVOTED mum whose young son suffers from an extremely rare genetic condition has told of her hopes for a miracle cure as the year draws to a close.
Louise Cheung’s precious ten-year-old son James is thought to be the only person in the UK with IMAGe Syndrome – a devastating condition affecting growth and development.
The highly unusual condition means constant hospital visits, but James – who is also deaf and has learning difficulties – always has a smile on his face despite everything he has to go through.
Louise said: “My James is the happiest little boy you could ever wish to meet and never complains in spite of it all.”
Remarkable James, of Staffa Drive, Tibshelf, was diagnosed with IMAGe Syndrome when he was just eight-months-old and receives treatment at Chesterfield Royal, Great Ormond Street and Sheffield Children’s hospitals.
Part-time proof-reader Louise said: “He’s growing more slowly than other children his age and suffers from other problems – he needs lots of medication and injections every day.
“Day-to-day life is tough but we have to get on with it and just accept this is the unfortunate hand we’ve been dealt.
“I don’t know what the future holds for James – I just hope and pray doctors come up with a great, wonderful cure for this little-known condition,” she added.
Forty-three-year-old Louise is seeking to raise awareness of IMAGe Syndrome – which affects less than 20 people worldwide.
She said: “As his mother, I’m very keen to raise the profile of James’ condition.
“I strongly believe there are other undiagnosed cases of IMAGe Syndrome in the UK.”
Louise told how James – who won a Derbyshire County Council Young Achievers’ Award for bravery after being nominated by his headteacher at Town End Junior School – tries to live as normal a life as possible.
She said: “He loves going to school and has a really good circle of friends who see beyond his disabilities.
“He really is one in a million. I love him so much – and I always will.”
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