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Sianon (8) has seizures most nights, but a new hi-tech bed means both she and her mum can rest easy

Claire McGill from Londonderry, tells Stephanie Bell how a specialist bed donated by the charity Newlife and Marks & Spencer has made a huge difference to helping care for her daughter, who has epilepsy

Published 15/12/2015

Fears allayed: Claire McGill with her daughter Sianon
Fears allayed: Claire McGill with her daughter Sianon
Fears allayed: Claire McGill with her daughter Sianon

Most parents can tuck their children into bed at night reassured that there is no safer place for them to be, but for one Londonderry mum this simple ritual triggered fear and anxiety which lasted the whole night through.

Claire McGill grew to dread bedtime when her eight-year-old Sianon - who suffers from constant seizures and has no awareness of danger - outgrew her cot and was able to climb over its sides.

Sianon, who has suffered from epilepsy since birth, also has global development delay which means she has no awareness of danger, cannot talk and doesn't sleep well.

Without protective sides she would throw herself out of bed often during the night, bruising and injuring herself in the process.

Having only learnt to walk two years ago and still unsteady on her feet there was also the danger of her getting out of her room and coming down stairs which she can't navigate on her own.

For Claire (28), who is Sianon's full-time carer and her partner Paul Taylor (41), who works in hotel security, night-time became a frightening time for them as they worried about the risks to Sianon.

They had tried numerous ways to try and keep Sianon safe, even turning her bedroom door handle upside down to prevent her getting to the stairs.

The only real solution, though, was a specially made padded bed with sides to prevent Sianon from throwing herself out - but at a cost of £7,000 the prospect of buying one was out of the question for the couple.

Instead they spent their nights anxiously monitoring Sianon and with the birth of their son Cole seven weeks ago, nights became even more of an ordeal for the couple.

Thankfully though a local charity has stepped in to provide the specialist equipment Sianon needs to remain safe in her bed. Now, not only can the whole family relax but for the first time the eight-year-old is also sleeping through the night.

The specialised bed was donated to the family by the Newlife Foundation for Disabled Children, working in partnership with retail giant Marks & Spencer.

Aware of just how worrying night times had become because of the risk of harm to Sianon, a community nurse suggested to Claire that she should apply to Newlife for support.

Newlife, which is the UK's largest charity funder of specialist equipment for children with disabilities and terminal illness, sent out a specialist bed through its Emergency Equipment Loans Service - and now, with the support of Marks & Spencer which work in partnership with the charity, Sianon has been given her own permanent bed.

"We got a loan bed first with the promise of a permanent one which is great as it will do Sianon for life," says Claire.

"It has made an incredible difference to Sianon and the whole family.

"She is sleeping better than she ever did and we can relax knowing the she can't throw herself out of bed which she was doing every night.

"She landed on her head once and had a big bump and another time landed on her arms and hurt them. Thankfully, though, there has been no serious injury or broken bones.

"We have tried different things to make her safer. I had put a mattress on the floor to prevent her from injuring herself. Then I had to put a mattress down for her to sleep on so that she wasn't jumping out of bed.

"She would roam around her room at night and that was also a worry because there was always the danger that she would fall downstairs because she isn't able to walk down without help.

"We put the handle on her bedroom door upside down to try and stop this. Her new bed is amazing because she can't get out of it and it is padded on all sides to protect her if she has a seizure.

"Sianon needed a high-sided or closed in bed so she can't fall out.

"The bed we got from Newlife is perfect. It has one plastic side with a zip down it and she can see out and we can see her and she can't climb or jump out of it."

Sianon, a pupil of Ardnashee Primary School, has a type of epilepsy that can result in between five and 15 seizures a day and she will also have seizures most nights.

While most of the time she can bring herself out of a seizure she is at risk of more severe attacks which require urgent medical attention.

Sianon will make noise when she goes into a seizure which alerts Claire through a baby monitor in her bedroom.

"Her room is next to ours and we have the monitor so we do hear her if she goes into a seizure," says Claire.

"Most of the seizures are harmless and we just go in and comfort her until she comes out of it, but if she has a severe one we have to give her medicine straight away and ring for an ambulance."

Claire describes little Sianon as "mischievous" and says her daughter loves school.

"She is great; she is so cuddly and loving and just loves to give you kisses," she says.

After an anxious year of worrying every night when she put her daughter to bed, Claire feels indebted to Newlife and Marks & Spencer for transforming the quality of her daughter's sleep and for giving her peace of mind that her daughter can go to bed without risk of injuring herself.

"It has taken one more worry away from us - and it was a big worry," she adds. "Now we know she is safe in bed and she is also sleeping through the night now since getting her new bed which with a new baby in the house has really lifted pressure from us.

"It has given us a lot of relief and calmness. We can't thank them enough."

M&S has worked in partnership with Newlife Foundation for the last 11 years, donating returned products to the charity to be resold or recycled. The majority of the donated products are sold in the Newlife SuperStore in Cannock, England, and the charity recycles the remaining items, all to raise money for children with disabilities.

In October 2010, M&S launched a grants scheme, which has specifically helped fund 200 pieces of essential equipment, totalling around £600,000 for children with disabilities and terminal illness across the UK.

Ellen Watters, M&S Crescent Link store manager, says: "Being able to provide the equipment to Sianon is extremely rewarding for the M&S team and it's great to know what a positive impact it will have. Our partnership with Newlife is not only great for the environment, but it also helps to improve the lives of disabled children by providing much-needed specialist equipment."

Sheila Brown, chief executive of Newlife Foundation, adds: "Our partnership with M&S benefits hundreds of children and their families. It is very encouraging to see the efforts of M&S in helping to improve the lives of disabled and terminally ill children within the local community and across the UK. Equipment that costs hundreds to several thousands of pounds really can transform lives.

"We are very grateful to everyone involved and would encourage other groups and individuals to keep fundraising to help us make a difference."

  • Information on the charity can be found at www.newlifecharity.co.uk or the trading company at www. newlifetrading.co.uk. For further advice from the Newlife Nurse Services, tel: 0800 902 0095

Belfast Telegraph

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