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LISA Davies with her daughter Chloe, who suffers from Dravet’s Syndrome.
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"We need more help"
Emma Fitzgerald7/ 9/2006
A DESPERATE mother who is struggling to cope with her disabled daughter says she fears what she may be driven to do, if she does not receive help.
Lisa Davies says she and other families caring for sick youngsters need a greater level of support and has written to Prime Minister Tony Blair describing her plight.
Lisa's daughter Chloe, six, is one of only 500 people in the world with Dravet's Syndrome - a life-threatening condition which means she cannot talk and needs round-the-clock care.
Chloe has regular seizures, behavioural problems and multiple learning disabilities. She screams almost constantly and cannot be left alone other than inside a purpose built 'safe space' inside her Cadishead home.
The youngster cannot do anything for herself and has attended hospital around 500 times already in her short life.
Lisa, 30, says there are many agencies involved in Chloe's care, including a social worker, the Diana Community Nursing Team and Crossroads for Carers. But as a single parent, with another daughter, 11-year-old Megan, she finds it hard to cope.
The nights Chloe is able to spend at Francis House in Didsbury have also recently been halved due to funding.
Lisa sent a copy of her letter to the Advertiser and intends to send it to her MP, Chloe's doctor, her social worker, all the agencies involved in Chloe's care as well as her relatives.
In it, she states: "The truth is I'm finding it increasingly difficult to cope with Chloe. It is physically demanding work and emotionally demanding too. I'm coming to the end of my tether and I'm not sure what will happen when that point is breached.
"Three weeks ago I had to ring my GP and ask for Diazepam to calm me down because I felt myself sliding into the abyss of depression and anxiety.
"I'm already on anti-depressants and struggling to cope with Chloe and keep my home nice for the children. It is proving an uphill battle that I feel I'm on the worse side of."
Lisa has little help from her own family as her parents are both disabled themselves - her mum following a brain haemorrhage and her dad following a motorbike accident.
Speaking to the Advertiser, Lisa, who had to give up her job as a carer with Salford City Council, said: "Chloe goes to Springwood School but they seem to have so many holidays. If she was an adult she would be able to go to a day centre five days a week for most of the year.
"She's usually quite happy but in the school holidays she gets increasingly frustrated. When I put her in the safe house I'm constantly battling with my guilt because it's like I'm putting her in a cage like an animal. It's draining all the time. Sometimes I think I would like to go to bed, curl up and not wake up because I can't see a light at the end of the tunnel.
"I'm quite a level-headed strong person and I seem to bounce back from things, but it frightens me that if I'm getting like this how are other parents with children like Chloe coping?
"You hear about parents doing drastic things. I think to myself one day I might do the same. I might not harm myself but I might just turn round and say 'I can't cope any more'. Why should my family have to break down because we're not getting the help we need?"
Lisa finishes her letter with a chilling statement: "I bid you to remember the cases where people with special needs kids have actually ended their lives because they couldn't cope. They asked for help and nobody listened.
"That's not to say I feel that way today, but who's to say after another couple of years I won't. We need more help. All of us."
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8/09/2006 at 11:36