A South Holland family is campaigning to raise awareness of a genetic disease which has struck at its heart.
Hairdresser Lara Cole is raising money for the Huntington’s Disease Association after her mum Mandy Vickers was diagnosed with the condition in the summer, having been unwell for many years.
The disease is caused by a faulty gene within the DNA, and there is a 50 per cent chance of it being passed on to children. The nature of Huntington’s makes it very difficult to diagnose as it presents symptoms similar to many other conditions.
“Mum was ill for a long time before she was diagnosed, there’s not enough awareness of it within the medical profession,” said Lara.
The Pinchbeck hairdressing business where she works, Roots, recently hosted a cake sale to raise both money and awareness of Huntington’s, and the far-reaching impact it has within her family as it is an inherited condition which she has a 50 per cent chance of developing.
Lara said that the family thinks her grandmother probably also had Huntington’s but she was never diagnosed.
“Probably 40 years ago they didn’t really know a lot about it, and they weren’t diagnosing people. Not many people know about it now.
“We had a cake sale and raised some money, it’s been a really difficult time for us all and more people need to know about Huntington’s and what it is,” she said.
Lara and her husband Matt have a six-year-old son Stanley, and the future is currently unclear for them.
“I won’t get tested myself until Stanley is able to, and he has to be 18 before they will consider it. It is a huge thing, and not enough people know about Huntington’s and what it is. I have a 50 per cent chance of developing it, and if I have it then there’s a 50 per cent chance Stanley has it too,” she said.
Lara has also created a JustGiving online charity page where her initial target of £500 has been smashed, and her total of £1,405 on Monday is 281 per cent of the original amount.
“I can’t believe it – the amount just keeps rising and people are being so generous.”
Her dad, Paul Vickers, said although the diagnosis had taken a long time, it was a relief to know what had been at the root of his wife’s ill health over many years.
“It answers a lot of questions we had about her illness, and it has an effect on the nearest and dearest. It is very difficult for doctors to diagnose, it has so many symptoms of other conditions. My wife has a sister who also has grandchildren, so it is really very difficult for the families,” he said.
“If it hadn’t been for the Huntington’s Disease Association I don’t know what we would have done,” he added.
The association is the only charity in England and Wales dedicated to providing information, advice and help to those affected by the disease. It has been around since 1971 and works with professionals to improve care and support.
Lara’s fundraising page is online at JustGiving.com, search for ‘Lara’s fundraiser for Huntington’s Disease Association’.
