13-year-old suffering from dementia

The little schoolgirl from Exeter, Devon, was diagnosed with the illness Niemann-Pick disease, type C, at the age of nine. It has been four years since Isobel exhibited signs of dementia.

She started losing her concentration and her speech became incoherent. Her movements became unsteady and she found it difficult to swallow food. She was unable to meet the usual childhood milestones, losing control over mind, displaying memory loss, hallucinations and confusion.

Nicola, her mother states, “When Isobel was nine she suddenly started slurring her words and was less clear in her talking. It sounded like she was drunk. We don’t know why it is happening. Izzie effectively has Alzheimer’s although she is only 13.”

Nicola says her daughter’s mind has started deteriorating. "We have been told she will gradually deteriorate. Two years ago she was no longer able to swallow enough and she had an operation to enable her to be tube-fed into her stomach."

Child dementia a rare disorder
Child dementia is a rare disorder affecting only one in 12 million. Although the ailment is curable, unfortunately Isobel has not responded. She underwent numerous tests that showed her condition will deteriorate over time.

Doctors reckon the disorder will gradually reduce her ability to talk and walk and shorten her life span. She has been given just ten to 15 years to live, and she may be gone before her 30th birthday.

Nicola said, “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.”

Isobel vibrant despite illness
Isobel goes to Ellen Tinkham School but because the disease entails large doses of medication, her immune system is extremely vulnerable. She is invariably sick and also suffers from epilepsy.

Nicola said: "Despite all this, Izzie is one of the most vibrant people I have ever known, with a wicked sense of humor and enthusiasm about life. She tries to live her life to the full."

Mother participating in bike ride to raise funds
Nicola is participating in a 370-mile bike ride from London to Paris next Wednesday to raise funds for research, by creating an awareness campaign of her daughter’s condition.

Nicola said, “Izzie is my inspiration to do the cycle because she is dealing with her illness with such bravery and strength. Any respite I get I use it to train, there will be 72 of us cycling for the Alzheimer’s Society.”

Terry Roberts, Alzheimer’s Society Exeter and District branch chairman, said, “This is a very sad state of affairs, re-emphasizing how important total support is not only for the young person but for the carers.

“This is always a great concern of ours and is often so sadly missing. We have a lot to learn and hopefully we will in the future.”