The 'horrible' overeating disease that cut short a young woman's life

Kimberley aged 8, pictured in the ECHO with her assistance dog
Kimberley aged 8, pictured in the ECHO with her assistance dog -Credit:Liverpool ECHO

A grieving mum will stand in front of the Town Hall at the end of the month to remember her "funny and cheeky" daughter, whose life was cut short by a genetic condition.

Linda George, 62, from Leasowe in Wirral, lost her daughter Kimberley in December last year. Kimberley, who was 32 when she died, suffered with Prader-Willi syndrome, a rare genetic condition that comes with a wide range of physical symptoms, as well as behavioural problems and learning difficulties.

Linda is keen to increase people's awareness of the condition, which she describes as "a horrible, horrible disease". She says Katie Price's son Harvey, a high profile sufferer of Prader-Willi Syndrome, has helped improve people's awareness of the condition, but there is still a widespread lack of understanding about the impact the disease has on sufferers and their families.

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Speaking to the ECHO, Linda, who has three other children - Stuart, 21, Melissa, 28, and Samantha, 35 - described her second-born child as "funny and cheeky, with a great sense of humour". She said: "Kimberley had a great personality. She was so good to be around when she was on form. She absolutely loved animals, they gave her a lot of joy."

According to the NHS, Prader-Willi syndrome is caused "purely by chance", and comes about as a result of "missing genetic material in a group of genes on chromosome number 15". This is thought to affect the hypothalamus, which produces hormones and regulates growth and appetite.

The Prader-WIlli Syndrome Association says the syndrome occurs randomly in one in every 22,000 births. Around 2,000 people in the UK are thought to have the condition.

Typical symptoms of Prader-Willi syndrome include: an excessive appetite and overeating, which can easily lead to dangerous weight gain; restricted growth, with children being much shorter than average; learning difficulties; and behavioural challenges, such as emotional outbursts and physical aggression.

Kimberley, who was diagnosed with Prader-Willi syndrome on her third birthday, presented many of the symptoms typically associated with the condition.

Her mum said: "Kimberley was on the autism spectrum and suffered with mental health problems throughout her life. When she was born, she had difficulty feeding, and her development was delayed. She also had low muscle tone."

As Kimberley got older, her symptoms evolved. Like many Prader-Willi sufferers, she became persistently and insatiably hungry. People with the condition often become morbidly obese. According to the NHS, "someone with the syndrome can eat much more than other people and still feel hungry - and limiting food intake can be very challenging".

Linda said: "The doors literally had to be locked, with alarms put on them to stop her getting at food. If Kimberly got access to food - absolutely anything - frozen food, you name it, nothing would stop her eating it."

The family often struggled as they navigated the challenges of living with a loved one with complex needs, who was in need of round-the-clock care.

Linda says the impact was particularly severe on her other kids. "As her parents, we just got on with it. But the kids did find it hard. It was more difficult for the kids than us."

Sadly, there is no cure or treatment for the condition. Linda said: "The main thing is just managing food intake and encouraging exercise."

While Prader-Willi syndrome itself is not life-threatening, compulsive eating and weight gain can lead to serious obesity-related conditions, including type 2 diabetes and heart failure, reducing the lifespan of suffererers. Kimberley herself died of pneumonia in December.

On May 31, her family will gather outside Liverpool Town Hall to remember the young woman whose life was so badly affected by this cruel disease. The Town Hall will be lit up orange to raise awareness of Prader-WIlli syndrome and help keep the memory of loved ones alive.

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