Dad aims to boost children's hospice

A FATHER who lost his son to a rare disease is holding a fundraising event this weekend in his memory.Carl Button, of Browning Road, Ipswich, is volunteering at a sponsored walk and ride in aid of East Anglia's Children's Hospices, which helped the family both before and after Toby's death, on Father's Day tomorrow.

A FATHER who lost his son to a rare disease is holding a fundraising event this weekend in his memory.

Carl Button, of Browning Road, Ipswich, is volunteering at a sponsored walk and ride in aid of East Anglia's Children's Hospices, which helped the family both before and after Toby's death, on Father's Day tomorrow.

Mr Button, 33, became his son's carer when he was diagnosed with a very rare form of Battens Disease - a degenerative terminal illness that affects the nerve cells in the brain.

Toby was first taken to the doctors about symptoms when he was four years old. He was diagnosed a couple of years later and then progressively lost all ability to do anything for himself. He died at the age of ten on January 4, 2004.

Mr Button, who has two daughters and two stepsons, said: “He was undergoing tests, which revealed they said Toby would only live to his early teens.

“It hit me hard and I felt very alone. You never think something like that will happen to you. So little was known about this rare illness the hospital was limited in what they could tell us.

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“Thankfully though, two lovely people from EACH introduced themselves.

“When Toby's needs became more demanding EACH supported the whole family - never more so than on the day we were told that Toby only had days to live.

“EACH's great team offered the end of life care that only they can and we were all there together for close on a week.

“I can honestly say that I don't know how I would have coped without this wonderful charity.

“It is times like Father's Day when it hits you again. I hope as many people as possible can come along and support this event.”

As well as being there to support the family, the charity can also help fill out forms and look after the child to give their carers and relatives a break for a few hours.

Ride for Life, which is annual event for the charity, is due to take place at the Rendlesham Forest Visitor Centre.

There will be a barbeque, refreshments, stalls, and family games at the event and everyone is welcome to attend.

To enter online visit www.each.org.uk/rideforlife or turn up with your bike or a good pair of shoes at the visitor centre between 10am and 11.30am.

Are you raising money for a special cause? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN, or e-mail eveningstarletters@eveningstar.co.uk