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Second tragedy for heartbroken family
3:10pm Wednesday 16th January 2013 in News
A HEARTBROKEN mum has seen a cruel disease rob her of a son, just a year after she lost her daughter to it.
Marina Philpott lived through the nightmare of burying 13-year-old daughter Bridie in January last year.
Now she must lay Bridie’s older brother John, 16, to rest as well, after he passed away at Little Havens Children’s Hospice on Monday.
The siblings, from Crouch Road, Chadwell St Mary, appeared to be normal, healthy youngsters up until 2004, when a deadly variant of the incurable Batten disease struck and saw them rapidly deteriorate.
Sarah Mitchell, 23, a close friend of the family, said John was an “inspiration” and adored by everyone who knew him.
She said: “John was our little fighter, he had the most loving personality and everyone who knew him adored him.
“He had the cheesiest smile and most infectious laugh.
“No matter how bad things were for John, he was always smiling. He was, and still is, an inspiration.
“He is going to be greatly missed by everyone who knew him, but he is now out of any suffering and at peace with his little sister Bridie.
“We would like to thank everyone who has been involved with John, his friends, care team and everyone at Little Havens.” Batten disease is an inherited disorder of the nervous system which begins in early childhood.
For some time Bridie and John were the only known carriers of the disease in the UK and there are still only a handful of sufferers here now.
The first symptoms usually appear between the ages of five and ten, when an apparently healthy child begins to develop vision problems or seizures and sometimes personality and behaviour changes, along with slow learning and clumsiness.
As the disease progresses, its victims sufffer mental impairment, a progressive loss of sight and motor skills and worsening seizures.
The disease is often fatal by the late teens or twenties.
John’s funeral will be held at St Mary’s Church, in Linford Road, Chadwell St Mary, at 1.45pm on Monday (January 21), and from 2.30pm at Chadwell Cemetery, in Brentwood Road.
The family welcome flowers and there will be donation boxes for the hospice at the church.
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