Hi all, Many of you know our fantastic morning valet Charlie. What many of you may or may not realise is that he has been diagnosed with a rare condition that is having serious deterioration on his body and as a result.

Fatal insomnia is an extremely rare and devastating neurodegenerative disorder. It is characterized by progressively worsening insomnia, which eventually leads to severe physical and mental deterioration. There are two types of fatal insomnia: Fatal Familial Insomnia (FFI) and Sporadic Fatal Insomnia (sFI).

Key Points About Fatal Insomnia:

Cause:

FFI is caused by a genetic mutation in the PRNP gene, making it hereditary.

sFI occurs sporadically without a known genetic cause.

Symptoms:

The hallmark symptom is progressively worsening insomnia.

Other symptoms include cognitive decline, memory loss, hallucinations, weight loss, and autonomic dysfunction.

As the disease progresses, patients may experience severe motor disturbances, speech problems, and eventually dementia.

Progression:

The disease typically progresses through four stages:

Increasing insomnia, leading to panic attacks and paranoia.

Hallucinations and more severe panic attacks.

Complete inability to sleep, rapid weight loss.

Dementia and unresponsiveness, leading to death.

Diagnosis:

Diagnosis is based on clinical symptoms, sleep studies, and genetic testing (for FFI).

Prognosis:

Unfortunately, fatal insomnia is always fatal, with death occurring within a few months to a few years after onset.

There is currently no cure or effective treatment, and care is primarily supportive.

Understanding the Impact:

Fatal insomnia not only affects the individual but also places a significant emotional and physical burden on their loved ones. Raising awareness and supporting research are crucial steps towards finding a cure and providing better care for those affected.

As you will have noticed and be aware, Charlie and his family are going through an incredibly physical, mental and emotional journey and I have put together this gofundme to help give him the best possible end of life that he deserves.

Every donation, no matter how small, will make a significant difference in Charlie's life. Your support will not only provide financial relief but also offer emotional strength and hope during this trying time.

I understand that not everyone may be in a position to donate, but you can still help by sharing this campaign with your network. Spreading the word is just as valuable and will help reach as many people as possible

I think we can all agree that Charlie has been a fantastic colleague and friend to all of us at Bayswater, who has always been a positive character to have around the building. Let's help one of our own.

Please also visit https://curecjd.org for more useful information and help