Led into court in handcuffs, the father accused of killing his terminally-ill son

Jacob Wragg was a toddler when doctors broke the terrible news. Andrew and Mary Wragg would have been told their son had an incurable illness and would die, probably before he even reached his teens.

Jacob Wragg was a toddler when doctors broke the terrible news. Andrew and Mary Wragg would have been told their son had an incurable illness and would die, probably before he even reached his teens.

After initial progress, their little boy would start to degenerate. They would have to watch as his body and mind slowly regressed to an infant-like state. And finally they would lose him.

Yesterday Andrew Wragg, 36, appeared before Chichester magistrates' court accused of murdering his terminally ill son before being remanded in custody. In what both prosecution and defence described as a tragic case, the former soldier is accused of killing his 10-year-old boy, who died of suffocation.

He was arrested along with his wife Mary, 40, after they made a 999 call from the family home in Worthing, West Sussex on Saturday night. She was later released without charge.

What happened that night remains a matter for the courts.

What is not in question, however, is that Jacob had Hunter disease, a genetic condition without cure caused by a missing enzyme. A form of Mucopolysaccharide disease, it is as rare as it is debilitating. Only 39 babies have been diagnosed in Britain in the past 10 years.

Children often suffer from restrictive growth and characteristics such as enlarged heads. They lose their mobility, mental faculties and in some cases their sight and hearing. They can suffer from aggressive behaviour and hyperactivity.

At the age of 10, a child with severe Hunter disease is nearing their expected lifespan, a time when the degeneration accelerates. Friends of the Wraggs said that Jacob had become increasingly sick and was in regular respite care.

His father had been working as a security guard in Iraq for some months while his wife cared for Jacob. He would, experts said yesterday, probably have seen a marked deterioration in his son.

"From the moment of being diagnosed it is horrendous. You have to live knowing not only are they going to die but you are going to have to watch them degenerate. They will go from perfectly normal looking, intelligent little boys to severely physically and mentally damaged," said Karen Sunderland-Hoather, 44, yesterday.

Within the past five years she has lost both of her sons to the illness. Her older boy, Simon, was diagnosed when he was 18 months old and she was pregnant with her second son, Michael. They were both dead at the age of 12.

For the first few years life was normal but slowly they began to go downhill. She learnt to cope with people staring at them in the street, watching them lose their ability to write or speak, and dealing with her older boy's death knowing the second would soon follow.

"It was traumatic. After Simon died I remember saying to the funeral director I will be in touch in a year or so," she said.

A psychiatric nurse, she channelled her "shock, horror and anger" into raising £750,000 for the Genes, Enzymes and Metabolism Appeal at the Royal Manchester Children's Hospital. The joy that studious and sporty Simon or her "scallywag" Michael gave her made it all worthwhile, she insisted yesterday, while acknowledging that for some people the burden could be overwhelming. The mental anguish was "extremely, extremely hard," she said.

Kate Hall, 23, and her husband, Andy, who live in Worcestershire, are still dealing with the constant physical and mental pressure. Her four-year-old boy Isaac was diagnosed with Hunter disease two years ago.

Since then she has watched the "gorgeous" son she "loves to bits" go downhill, to the point where he needs constant care.

He has bulked up to twice his normal size, Mrs Hall explained, adding: "On severe days, he cannot raise his head off the pillow. He is doubly incontinent so he needs to be washed constantly but to bathe him is extremely difficult."

Whereas once he spoke in sentences, now he utters the words of a baby.

"He screams all the time. He can be really affectionate and then turn around and bite you," she said. "He used to say he loved us. Now if you say, are you OK, he cannot say yes or no. It is very hard see your child be able to do something one day and then the next they cannot."

When the strain of no sleep and constant care nearly caused Mrs Hall to have a breakdown last November, her husband gave up his job as a ceramic tiler to share the burden.

Like Mrs Sunderland-Hoather, Mrs Hall had no idea she was a carrier and has had to face the unjustified guilt of knowing that the illness came from her. "It is very hard knowing he will never get married, we will never have grandchildren," explained Mrs Hall.

Today around Rochdale, Lancashire, Mrs Sunderland-Hoather bumps into teenage boys who were once her son's schoolmates. She said: "My bitterness and anger has gone. It is just sadness at the loss now."