Devoted mum Criona Wilson helplessly watched on as chronic ME took the life of her daughter Sophia. Now, she is fighting to raise awareness about this debilitating illness
By Sarah Spendiff
Monday March 08 2010
Criona Wilson heard the old war song in her head, Now Is The Hour We Must Say Goodbye, and knew her daughter, Sophia, was about to die. The former midwife from Ennis, Co Clare, had been nursing her youngest through years of chronic ME, watching as the disease stole every part of her, bit by agonising bit.
She had not walked, talked, sang, laughed or basically lived for the past few precious years.
Her condition deteriorated so quickly, that what started as a weekend visit to her mother ended in this -- Criona, standing outside Sophia's bedroom door, listening as her beloved daughter's breathing slowed to a stop. She was only 32.
How could it be that an illness, once thought so benign as to be dismissed as 'yuppie flu' and to affect 'malingerers and hypochondriacs' be so cripplingly destructive?
A little-known fact is that of the estimated 12,000 ME sufferers in Ireland, a quarter of them will be so ill they can barely move, eat or speak.
In the UK, the 25pc ME group offers support and campaigns for more biomedical rather than psychological research. It is precisely because so much emphasis is placed on ME being a psychological illness that Criona is keen to speak out about her daughter's death.
The World Health Authority (WHO) has classified ME (myalgic encephalomyelitis) as a neurological disorder, which puts it in the physical category.
Back in 2002, the UK's chief medical officer, Liam Donaldson, stated that it was a serious condition that needed further investigation. That should have been the end of the debate yet virtually no resources have been put into finding a biological cause or treatment.
"It just doesn't make sense to me that Sophia, who was so obviously physically ill, could be treated as if she had a mental illness," says Criona.
Like many others of her generation, Criona relocated to the UK when she was younger. She trained to become a nurse and then a midwife, married and had four children. Sophia was her youngest.
After she died, a post-mortem revealed nothing initially, but further examination showed that the sensory part of her spinal cord was inflamed.
Yet during her illness Sophia was told to snap out of it, her mother was accused of making her daughter sick and Sophia was threatened with being sectioned. In 2003, this threat was carried out when police and social workers broke down the door of their home and carted her off to a mental hospital.
The devastating affects of ME hit headlines last year after the tragic death of 31-year-old Lynn Gilderdale, who had been bed-bound and tube-fed for years due to ME.
When her mother, Kay Gilderdale, was arrested and subsequently charged with her attempted murder, the news of how severe the disease could be and what carers go through went global.
Kay has since been cleared by the courts and her actions, of crushing drugs and putting them into Lynn's feeding tube, were dismissed by the judge who said she was clearly a devoted mother.
To help your child to die, having devoted your life to their total care, must be the ultimate sacrifice for any parent, and unimaginably painful. Although not implicated in a suicide agreement with Sophia, Criona says some people were concerned for her. Why?
"Because Sophia couldn't eat or drink and I didn't call a doctor, perhaps I could have been carted off to the police station to answer questions, but it didn't happen like that.
"Sophia begged me not to call a doctor for fear of being in a mental hospital again and I'm glad I honoured that wish.
"When she was alive I did everything I could for her, so now I am at peace with her dying."
Sophia is the first and last person so far to have officially died of ME