Neighbours in the East Sussex hamlet of Stonegate described Kay Gilderdale as an "absolute saint", a mother who had to watch her lively, sporty 14-year-old daughter Lynn become disabled by illness by the age of 31.
Sussex Police announced yesterday Ms Gilderdale had been arrested on suspicion of murdering her daughter. Officers from the major crime branch drove the 54-year-old away from her bungalow and for questioning.
Lynn's father Richard, a former police officer still working for the force as a civilian, along with her mother, brother Steve and other family, released a tribute to Lynn who had not only endured the ravages of ME (myalgic encephalopathy) but also years of scepticism from people who initially dismissed the illness as "yuppie flu".
She had shown courage to the end and her death left "a massive void", they said, adding that "the love she gave so unreservedly will be missed every minute of the day". The family added: "Lynn fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected. She required 24-hour care that was provided by her totally dedicated mother, with continuous support from Lynn's father.
"Prior to her illness, which left her paralysed, unable to speak, eat or drink and, until recently, no memory, she was an active healthy teenager full of life's dreams. She enjoyed sailing, swimming, cycling and was an accomplished musician."
Sussex Police said Ms Gilderdale, who was responsible for her daughter's round-the-clock care, had been released on bail to return on 6 March, pending further inquiries in an investigation led by Detective Chief Inspector Andy Griffiths. The Rother district police commander, Chief Inspector Heather Keating, added: "This is a very tragic incident, but we are not looking for anyone else in connection with it."
Lynn Gilderdale had done her best to maintain her sense of humour, despite the pain. "I am not brave, I have no choice but to be hopeful, otherwise I would just give up," she explained two years ago, in sign language translated by her mother from her bedside.
Lynn fell ill in November 1991 after suffering a reaction to a TB vaccination. By May the following year, ME had been diagnosed and the youngster deteriorated to the point where she was fed through a tube, slept for 16 hours a day and survived on a host of drugs.
At her worst, Lynn could only move her little finger, failed to recognise anybody, remember anything, experienced painful muscular spasms and shook all over. She could not bear any light, touch or noise and could hear only one whispered voice at a time. She suffered blood clots, severe osteoporosis, irritable bowel syndrome and asthma. In their joint battle to improve understanding of ME, mother and daughter had given several interviews, offering an insight into the agony of an illness that affects some 250,000 people in Britain.
"I don't resent what it has done to my life but I do resent whatever has made her so ill," said Ms Gilderdale two years ago. "It's been heartbreaking to watch my child lose her faculties one by one. But I am really hoping that once the virus which caused her ME has finally burnt itself out, everything else will start working again. People do get better, even those as ill as Lynn. Every time I read of such a case I am pleased for them, but I can't help wondering when it will be her turn.
"If she could come out of that room, it wouldn't matter where we went. It would be enough just to feel the air on our faces, see the sky, be part of the world. Lynn tells me she feels it is all out there, waiting for her to step back into."
Mrs Gilderdale, who is separated from her husband, said she was exasperated by those who simply put her daughter's condition down to tiredness and told her to "pull herself together".
"It is not that she doesn't want to. She wants to so much. Who would choose to lie in bed and be injected with drugs so many times your veins collapse over the life she had as an active teenager? Yet the Government is putting money into treatments such as graded exercise and cognitive behaviour therapy – which don't help those most severely affected by ME – rather than into research to find the cause. Until a cure is found, the thing which would make the biggest difference to our lives would be for everyone to realise it is a real and terrible illness."
Yesterday, the family's neighbours Catherine and Michael Klek said: "I just remember Lynn being a lovely girl, it was quite a shock when she was struck down by this illness. They are a very close family and very supportive of each other. I think Kay would do anything for her daughter. We have always thought Kay is an absolute saint for the way she looked after Lynn."
Now the Gilderdales have vowed to continue to campaign for a "better understanding" of ME. "In life, Lynn strove to help the medical profession improve their insight into ME, which affects thousands of people in varying degrees of severity. Her dedicated mother, supported by Lynn's family, has pledged to achieve her ultimate goal, for better understanding and recognition of this life-destroying illness."
What is ME?
*ME is better known as chronic fatigue syndrome and leads to exhaustion which is unrelieved by rest.
*It was first diagnosed in the 1980s.
*There is no test for it and it is less likely to affect men.
*It is believed to have both mental and physical causes.
*The best treatment is graded exercise therapy.
*Some patients do not fully recover from ME even after treatment.Reuse content