Published: 00:01, 22 February 2016
Kirsty Keep was a happy, healthy girl until she turned 12 and was bitten by an insect in her garden.
That bite changed her life and Kirsty, now 23, frequently spends weeks at a time in hospital.
She has lupus, a condition where her immune system attacks healthy cells, tissue and organs.
The bite spread to the size of an adult hand and Kirsty spent three weeks at Maidstone Hospital while doctors investigated.
At 16 her face was paralysed by Bell’s palsy, requiring surgery, and she had trigeminal neuralgia – sudden, severe facial pain that feels like electric shocks. She started having fits 18 months ago.
But the worst part is the chronic pain.
Speaking from her bed at Tunbridge Wells Hospital, Pembury, where she has been since last Monday, she said: "My bones feel like they're being snapped and my muscles ripped.
"It feels like there’s someone inside me pulling my insides."
Doctors have prescribed strong painkillers, steroids, medication to suppress her immune system, anti-inflammatory injections she had to administer herself, and even chemotherapy drugs, but nothing has worked.
Kirsty, who is too weak to do simple tasks like open a door or take the lid off a bottle of water, lives with her mum Theresa Keep in Mangravet, Maidstone.
"My bones feel like they're being snapped and my muscles ripped" - Kirsty Keep
Mrs Keep said: "When she has bad days you feel like you're watching her go.
"She's begged me to take her to Switzerland and said she doesn't want to do it any more.
"That's not something you want to hear from your daughter. You're heartbroken every day.
"Every few months, when she can't stop being sick, she has to come into hospital and go on a drip because she's dehydrated. All she wants is a normal life."
Kirsty is being referred to a lupus specialist at Guy's Hospital, London, but her mum believes she was bitten by a tick and is also suffering from Lyme disease, a bacterial infection that has symptoms in common with lupus.
Tests in the UK came back negative, so family and friends are fundraising for more investigation and treatment.
The NHS admits lupus is "a complex and poorly understood" condition.
It can be caused by a person's genetics or environmental factors such as exposure to sunlight, hormonal changes or certain infections.
It can be mild or life-threatening, causing severe joint pain, tiredness and rashes and 90% of sufferers are women.
One patient is former BBC news presenter Triona Holden whose television career ended at 39 when she developed lupus after falling ill while filming in Romanian orphanages.
Now enjoying a career as an artist, Triona, from Whitstable, said: "Kirsty's story is very sad but I know from my own experience you can pull through and live a relatively normal life between flare-ups."
Childhood friend Holli Breeze Hughes, Kirsty's other sister Chloe Keep and family friend Lesley Andrews are organising a reggae and raffle fundraising evening at The Bull Inn, East Farleigh.
It runs from 7pm to 11pm on Friday, March 4. Entry by donation, all welcome.
To donate a raffle prize email email@example.com or see Kirsty’s Fund on Facebook for more.