12:11pm Tuesday 10th June 2014
VILLAGERS are rallying round to raise vital funds to help transform the quality of life for a teenager who suffers from severe epilepsy.
Elle Hennin can regularly have 100 seizures a day, and sleeping is made more difficult because of the limitations of her bed.
Her mum Michelle fears her 16-year-old daughter could fall out, and her legs and arms can become trapped in the metal side guard when she has seizures.
Michelle says a £3,000 specialist bed would ensure her daughter could sleep safely and prevent the bruising Elle suffers when hitting the metal bars.
After hearing about the bed Michelle’s best friend Anita Singleton stepped in to offer to stage a fundraising night at Rudheath Social Club.
Anita, who is on the club’s social committee, is hoping to attract 150 people to the fundraiser on Saturday, June 21, which is called Elle’s Bed Bonanza.
Anita has already raised between £600 and £700 towards the cost of the bed, and hopes the social club night will go a long way towards reaching the £3,000 target.
“Anita does lots of fundraising, and would help anyone,” said Michelle, 43, from Ash Bank, Rudheath.
“She is such a lovely person, loves Elle to bits, and said ‘we’ll get you this bed’.
“Everyone has been lovely and are all saying they will get the money for the bed, no matter what.
“I will be going to the fundraising event at the social club, and I’m sure it will be a very emotional night.”
Elle has Intractable Complex Syndrome Epilepsy (Lennox-Gastaut) phenotype.
She attends Hebden Green School at Winsford, and goes for 17 days a year for respite care to Claire House Children’s Hospice, which is where Michelle saw the specialist bed the social club is raising money for.
“Elle can have 100 seizures a day, and can fit all through the night,” said Michelle, who gave up work as a teaching assistant to look after her daughter.
“Elle has had her bed for nine years, and it is a nightmare at night – she is bruised up her arms and legs, which get stuck through the metal bars, and she could break something.
“The bed they have at Claire House is fantastic – it has clear plastic sides, which are higher than the bed she has now, and is padded all over.
“Elle could not trap her arms, the bed would keep her safe and would allow her to sit up.”
Elle’s bedroom and linked wet room were created by converting the garage at the family home thanks to £22,000 raised by family and friends.
The new bed would give Michelle more peace of mind at night, as her bedroom is linked to Elle’s via CCTV and she is worried Elle could fall out of bed.
Primary care nurses look after Elle three nights a week, allowing Michelle a chance to catch up on missed sleep from the other nights, when she cat naps between going down to her daughter.
It was an emotional occasion for Michelle when she and Elle watched Elle’s sister Yasmin, 18, perform at South Cheshire College.
Yasmin is doing a dance diploma, and the piece, called A Beautiful Brain, was about her relationship with Elle, with Yasmin playing herself and her best friend Megan Hope playing Elle, using one of Elle’s wheelchairs.
“It was lovely, and there was not a dry eye in the house,” said Michelle.
“It was very emotional, and Elle was saying ‘Is that me?’ Elle lives for music and dance, and always has a smile on her face. She goes to watch the bowls at the social club, and loves it.”
Michelle’s husband Paul, who works at Roberts Bakery, plays bowls at the club.
Elle’s Bed Bonanza features a disco by Mike Thomas, singer Big Gerry from Wales, raffles and auctions.
It starts at 8pm, tickets are £4, which are available from the club, and any auction items or raffle prizes would be welcomed.
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