LIFE is bitter-sweet for a Newton Abbot couple whose toddler son is not expected to live beyond the age of five.

Emma and Kevin Murphy are the proud parents of Fynn, five, and little Stanley, who was born just 18 months ago with a rare genetic disorder, Tay-Sachs disease.

Just one in 360,000 babies worldwide is born with the degenerative, life-limiting condition which reduces physical and mental agilities.

Despite the grim outlook, the ‘happy smiley’ tot is now part of a campaign to make more people aware of the illness and to raise funds for those who need constant care and support.

Mum Emma, who is 39 and lives with her family in Albert Terrace, admitted: ‘It’s not a good prognosis for Stanley. He is not expected to live past the age of five. It is devastating.

‘It’s the worst possible outcome – but we have to keep everything normal for Fynn.’

She explained: ‘We have to take the approach that we want Stanley to have the best life possible.

‘It is early days for us – and I have been in dark places. But we have some nice times with Stanley and Fynn. Stanley likes simple things – being outdoors in the pram, being around the children, cuddles and affection.

‘He has good days and bad days, but he is a happy boy. He waves, giggles and laughs.’

First signs that something was not quite right with her second-born came when Emma noticed Stanley was not developing at quite the rate Fynn had.

Small matters slowly magnified until it became apparent that all was not present and correct with the little chap.

He wouldn’t hold his head up or sit up and he could not roll. He was floppy and didn’t move food around his mouth.

At eight months a health visitor noticed one eye was turned slightly inwards. A subsequent test showed he had a ‘cherry red spot’ in the macula area of his retina which indicated he had a serious metabolic disorder, a fact Emma gleaned by searching the internet where she first learnt about Tay-Sachs and its certain outcome of premature death by progressively attacking the nervous system.

l From page 1

‘Blood tests were sent off for testing and we were told we were looking at a genetic disorder. We then had to wait over Christmas for the results. I don’t know how Kevin and I waited. We just took it one day at a time,’ Emma revealed.

Deadly Tay-Sachs was officially confirmed in February.

Emma said: ‘We went from thinking nothing was definite - and we still had hope - to being completely and absolutely devastated. It was the worst thing we could have imagined.’

At the moment Stanley has poor muscle tone and has no strength in his spine, although he can move his arms and legs. His joints are becoming increasingly stiff and he is not able to eat food so he has a feeding ‘peg’ fitted.

Ultimately, he will develop a loss of vision and hearing together with greater muscle weakness and seizures.

For the moment the family is doing its best to live life as normally as possible.

‘We have lots of support from community nurses, paediatrics, physiotherapy, play therapy and portage.

‘Stanley gets very tired - but we make the most of each day,’ said Emma.

Her youngest is currently helping to raise awareness of conditions like his with the UK children’s charity Genetic Disorders UK and their annual fundraising venture - Jeans for Genes Day on September 23.

Supporters can wear jeans to work and in return make a donation. Free fundraising packs are available on www.jeansforgenesday.org

Cure & Action for Tay-Sachs (CATS) Foundation will receive a grant from proceeds gathered after the Day to fund a children’s book for siblings of children with Tay-Sachs.

Emma said: ‘This book will be amazing. How Fynn deals with Stanley’s condition is one of my biggest concerns, apart from the obvious. He loves his little brother to bits and he worries about him.

‘He knows Stanley is poorly, and it is so difficult for the siblings to understand. Tay-Sachs has turned Fynn’s world on its head. To have some guidance in the book would be very helpful.’