The ice bucket challenge has created hilarious moments on social media sites and become a fundraising phenomena in aid of motor neurone disease.

But the chilling reality for sufferers is an early death sentence with no hope of reprieve.

One of the cruel condition's victims is Charlie van Orsouw, who sits in a wheelchair, unable to talk or move anything but her right hand.

Her mind is as sharp as ever, but her only means of communication is through an iPad she types words into.

She is a far cry from the outgoing nurse who four years ago, loved nothing more than walking her dogs. Motor neurone disease took that away from her.

It ravaged her body, destroyed the career she loved for 30 years and left her facing an early death sentence.

On Thursday, she celebrated her 50th birthday – a milestone she feared she’d never see. But as well as making plans for the special day, she has also planned her funeral.

That is the stark reality for sufferers of this brutal illness.

Charlie, who lives in the same house where she was born in Rhodaus Close, Canterbury, is closely supported by her family, including brother Arnie, friends and carers.

Her unimaginable ordeal began in 2011, just eight years after she suffered a cancer scare and had a benign brain tumour removed.

She started developing worrying symptoms including slurred speech, headaches and tiredness, underwent numerous tests and was signed off sick.

Then, in May 2012, she met a neurologist at Kent and Canterbury Hospital, who would break the news that would change her life forever.

Charlie said: "I thought he might tell me it was multiple sclerosis, but not MND.

"My face must have been a blank canvas. He asked me gently if I understood what he had said, which of course I did because during my nursing career I had seen patients with the illness.

"That July, I had further tests at King's College Hospital to confirm the diagnosis.

"Once I was home I felt my world tipped upside down. There were so many questions.

"Was my brain tumour not enough? How long would I live and would I make 50? Would I drown in my own saliva?

"Would I choke, and should I now just get out there and live every minute? It was very hard to talk and tell family, colleagues and friends."

Charlie said that some people she knew would walk past and not acknowledge her, which she put down to them feeling awkward and not knowing what to say.

She said: "I get very frustrated and emotional as my body has gradually shut down. It began with me having to use a stick, then two sticks and now I'm in a wheelchair.

"I was worried I was just a nuisance to everyone."

Although unable to move her body, Charlie still suffers constant pain in the limbs left motionless by the disease.

She said: "Because of my background as a nurse, I have been able to teach family and friends to do my feeding tube.

"My neck has tilted to the right and is very painful, when moved it grates, it cracks and sometimes it just feels like it will break.

"But my brain is active and my faith is keeping me strong. I hope when the time comes, I will let go. I have signed a 'do not resuscitate' and my family are aware.

"I have sorted my funeral and my wishes have been discussed with my family. I have also spoken to friends and listed items they would like to remember me by.

"My funeral will be at St Thomas's in Burgate where I was baptised and had my Holy Communion. I shall be laid to rest with the ashes of my three Briard dogs.

"A neighbour takes me to visit my parents' grave and we look at my plot and clean the mess off it.

"I have asked that any donations go to MND Association and Pancreatic Cancer.

"There is a quote by Eleanor Roosevelt which means so much to me.

"It reads 'many people will walk in and out of your life, but only true friends will leave footprints in your heart'."

Despite her disabilities, Charlie still enjoys visits to the cinema and theatre. She has also managed to go on several cruises, including one of the Norwegian fjords

A new wetroom is being installed at her home, which will also make it far easier for her to bathe.

Chrissie Batts, who is east Kent's only specialist motor neurone nurse, currently cares for 52 patients across Canterbury, Whitstable and Herne Bay.

She has held the post for five years and admits it is a tough and emotional job when the prognosis for all of her patients is so bleak.

She said: "I think the ice bucket challenge has been tremendous because as well as raising much-needed funds for research, it has really raised awareness of the disease, which has been a bit under the radar compared to the high profile of some other illnesses."