Desperate Kirsty Keep, 23, wants to undergo euthanasia at a clinic in Switzerland because her condition is so bad.
And it all began when, as a 12-year-old girl, she was bitten by a bug while playing in the back garden of her home in Maidstone, Kent.
She contracted lupus as a result and now she is too weak to even open a door.
The condition affects her immune system and attacks healthy cells, tissue and organs.
Last year it was reported that singer and actress Selena Gomez – who is the same age as Kirsty – was suffering from the condition.
She spent three weeks in hospital after the insect bite and it has transformed her life ever since.
At the age of 16 her face was paralysed with Bell”s palsy, sudden and severe facial pain that feels like electric shocks.
She began having seizures again 18 months ago.
Theresa 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”s sister Chloe has set up a fundraising page to raise money for research to find a cure.
She said: “The NHS don”t seem to know what to do.
“We really need help to get her to see a private specialist but any help or advice is more than welcome.”