Family's tribute to Toby

WITH his dad and step-mum at his bedside, ten-year-old Toby Button took his last breath and peacefully slipped away.Today with his family mourning their loss, his father remembered a treasured son who battled with a debilitating disease for most of his short life.

WITH his dad and step-mum at his bedside, ten-year-old Toby Button took his last breath and peacefully slipped away.

Today with his family mourning their loss, his father remembered a treasured son who battled with a debilitating disease for most of his short life.

Toby, who passed away earlier this month, was the eldest of Carl Button and Janine Mowles' children.

Mr Button, 30, of Cedarcroft Road, Ipswich, said: "I had always wanted children and Toby was the first one to come along. It was like every man's dream - a son.

"He soon found his feet. He loved kicking a ball about and flicking through magazines pretending he could read. He loved his food and like most toddlers he loved his cakes and sweets.

"But his speech developed a stutter, he lost a bit of co-ordination and he started becoming a bit incontinent."

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Aged just five, Toby was diagnosed with Batten Disease, which causes a progressive deterioration of the brain and nervous system.

Mr Button said: "It seemed that all of a sudden he couldn't walk anymore, couldn't speak, had no co-ordination and was doubly incontinent."

But Toby's family and Heathside Special School were determined to help him keep up with activities for as long as possible.

Toby, who lived with his dad, step-mum Sally Hagger, sisters and step-brothers, used to love horse riding and swimming and the sensory room at school.

He also loved his food - especially roast dinners, blackcurrant cheesecake and chocolate buttons - much of which was liquidised.

Toby was always included in activities with his sisters and step-brothers - Amy, eight, Chloe, six, Christopher, 12, and Aaron, nine.

Mr Button said: "They would include Toby as much as physically possible. Toby would always be given a name and a score in a computer game. If he was in the garden in his buggy he would always be pushed about and if he got on their nerves he would be told to shut up."

Family days out became easier after the family managed to get a minibus in September, bought with the help of money raised at The Evening Star's Press Ball last year for Disability Care Enterprise.

Although Toby came down with pneumonia in December, his family still had a nice Christmas day - mostly spent at Ipswich Hospital.

But as Toby's condition deteriorated, his family decided against painful and invasive treatment such as mechanical ventilation or a chest drain, opting to keep him comfortable with oxygen, a glucose drip, some suction to help clear his airways, his fit medication and painkillers.

Mr Button said: "As his parents we wanted him around, but we soon realised it would be very selfish to go to any length to keep him alive. There he was in a body that was always fitting, he couldn't see and there was absolutely nothing he could do physically for himself.

"We wrestled with our consciences and decided that whatever happened we weren't going to be too invasive. We just decided to keep him as comfortable as possible."

Toby died at East Anglian Children's Hospice early on January 4.

Mr Button said: "You could just hear the wind outside and the wind chimes in the garden and some music was on. His breathing slowed, he calmed right down and he went to sleep. He was finally at peace. There was no stress or strain or fits.

"If there is a right way for these things to happen, this was it. I was so glad I had enough courage to be there and (my fiancée) Sally had enough courage to be with me."

Do you have any memories of Toby Button? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN or send us an e-mail to


The funeral service is to be held at 1pm at the Old Cemetery Chapel on Wednesday, January 19, followed by the burial. All are welcome to attend.

Family flowers only, but people are invited to make donations to the East Anglian Children's Hospice c/o Michael Smy Funeral Directors, 145 Felixstowe Road, Ipswich, IP3 8EB.

TOBY Button's family would like to thank everybody who has helped.

They would particularly like to thank the East Anglian Children's Hospice for providing Toby and his family with a home from home and for providing the family with respite care.

They would also like to thank Toby's paediatric consultants and all the staff at Ipswich Hospital's Bergholt Ward, for providing Toby with a third home.

The family also wanted to thank Toby's school, Heathside Special School, as well as The Thomas Eldred pub, Cedarcroft Road, for providing a free venue for fundraising activities.

They wanted thanks to go out to everything who helped fundraise - including Castle Hill Infant and Junior Schools, Thurleston High School, Mayo Court sheltered housing scheme and The Evening Star.

Finally the family wanted to thank all their friends and family for their help and support, as well as everybody else who has helped.

The group of diseases known as Batten Disease - or the neuronal ceroid lipofuscinoses (NCL) - are progressive, degenerative, genetic metabolic diseases that occur in children and adults.

The condition is named after the British paediatrician who first described it in 1903.

Batten Disease is relatively rare occurring in around one in 30,000 births.

The illness leads to a progressive deterioration of the brain and nervous system.

At present, there is at present no cure or treatment that has any significant impact on the decline in bodily functions and early death.

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