Race against time to spare the misery of killer disease (From Thurrock Gazette)

Race against time to spare the misery of killer disease

5:32pm Wednesday 28th November 2007

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TWO Chadwell children are fighting a race against time and money to find a cure for the fatal genetic disorder which may kill them.

John and Bridie Philpott aged 11 and 9 are the only known carriers of Variant Late Infantile Batten's Disease in the UK.

Until three years ago they were healthy and active but are now blind, mute and confined to wheelchairs.

They are not expected to live through their teens.

As their condition is so rare there is hardly any funding available.

Mum Marina Philpott, 41, of Crouch Road, said: "There is only one researcher, Sarah Moles, working on this strain and she doesn't receive government funding."

"It would cost £46,000 to pay for a senior lab technician to assist her work."

The family have set up a charity to fund research even though it may be too late for John and Bridie.

Aunt Joanne Richardson said: "Time may run out for John and Bridie but I just don't want other families to live with this awful disease in the future.

"This is the beginning of a big drive and I plead with the good people of Thurrock to help us."

The Dreamboyz will be appearing at a special charity night at Colours Nightclub, Basildon on December 22. Tickets cost £10.

For tickets contact Margaret on 01375 844269 or Nicky on 07956468557.

Full details of all charity events and how you can pledge support can be found on www.curebatten.com

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