Family aims to raise awareness of disease

3:00pm Sunday 24th August 2008

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A KINGTON family are trying to raise money to fight a little-known disease that has had a devastating effect on their lives.

Ray Jones, aged 69, was diagnosed with Huntington’s Disease (HD) last year after he suffered a stroke and his family are to hold a folk dance next month to highlight the problems they have encountered.

His family also wants to raise awareness about Huntington’s, an hereditary illness that affects the nervous system and causes sufferers to experience spasms and twitches in their legs, as well as slurred speech.

Mr Jones’ daughter Mell believes her father is a risk to himself and his family as he does not notice danger.

Mrs Lloyd, who together with her sister Lyn has a 50% chance of developing the illness, said there were few resources available in the county for HD sufferers and Mr Jones would have to travel out of Herefordshire to receive respite care.

Herefordshire Council has told her that it would only fund the travelling costs – which could cost up to £1,000 – if the patient was at the advanced stage of HD.

At a meeting with the Mental Health Department for the Elderly, she said she was told that the only care provided was by carers visiting patients’ homes four times a day. Sensors could be fitted in the homes of sufferers.

She had been told by the Huntington’s Disease Association her father should receive 24-hour care.

The folk dance is at New Radnor Village Hall on Saturday, Sept-ember 6, at 7.30pm. Admission is £3 for adults and 50p children.

For more information about the night can call Mell Lloyd on 01544 230858.