Tuesday, 22 September 2009

THE GIRL, 13, WHO'S HAD DEMENTIA SINCE SHE WAS NINE


A 13-year-old girl is suffering from Alzheimer's-like dementia after developing an extremely rare form of the disorder.

Isobel Jeffery displays the same symptoms as some victims in their 70s, and can no longer feed or dress herself or walk or talk properly. She becomes easily confused and suffers memory loss, nightmares and hallucinations. Isobel was diagnosed with early onset dementia aged nine after she began to slur her words, lose the ability to swallow and became unsteady on her feet.

She now needs 24-hour care and will never develop the basic day-to-day skills to look after herself.


Child dementia is extremely rare and affects about one in 12million - about 500 worldwide.
It is sometimes treatable, but although there are 100 different types of dementia, including Alzheimer's, doctors say Isobel's condition has not responded to any medication.

Her mother and full-time carer, Nicola, 39, says her daughter has lost understanding of the world around her as her mind has gradually shut down. But she described her as a 'rare cookie' who retains a sense of humor and goes about her life with enthusiasm.

The mother of two from Exeter said: "When she was nine she suddenly started slurring her words and was less clear in her talking. It sounded like she was drunk."

"Now it is a relentless loss of skills and mobility. We've been told that she will slowly deteriorate. She has undergone extensive tests but the outcome is always the same."

'The prognosis is she will get gradually worse." She added: 'The cruel thing about dementia is that she is semi-aware of the fact that she is losing her skills."

"Despite all this, she is one of the most vibrant people I have ever known, with a wicked sense of humour and enthusiasm about life."

After her diagnosis Isobel gradually lost the ability to concentrate and her conversation became 'fixed' and 'rigid'.

Doctors have said that the condition will eventually rob her of her ability to walk, speak and even communicate with her family at all.

She has been given just ten to 15 years to live - meaning she could be dead before her 30th birthday.

Dementia is a degenerative and progressive disease which can affect all areas of mental and physical functions, not just memory. Diagnosis before the age of 65 is considered as early onset. For Isobel it has meant learning difficulties, impaired memory and sensory processing problems.

Isobel lives with her mother, father Keven, 39, a nuclear safety engineer, and sister, Katie, eight.

Mrs Jeffery said: 'Two years ago we took the painful decision to have an operation to enable her to be tube fed directly into her stomach because she was no longer able to swallow."

"We don't know why it is happening. Izzie effectively has Alzheimer's although she is only 13. But she is a rare cookie and really has made every attempt to live her life to the full."

Terry Roberts, of the Alzheimer's Society, said: 'This is a very sad state of affairs which re-emphasizes how important support is for the young person and the carers."

Mrs Jeffery is taking part in a four-day, 370-mile bike ride from London to Paris to raise awareness of her daughter's condition and funds for research. It begins on September 16.

To sponsor her, visit www.justgiving.com/nicolajeffery2.

(Source: The Daily Mail, September 12, 2009 - http://www.dailymail.co.uk/health/article-1212904/The-girl-13-whos-dementia-nine.html?printingPage=true)The mother of two from Exeter said: 'When she was nine she suddenly started slurring her words and was less clear in her talking. It sounded like she was drunk."
"Now it is a relentless loss of skills and mobility.

(Join The Malaysia National Alzheimer's Caregivers Online Network - NACON )

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