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Mother talks of youngsters life with epilepsy

By Burton Mail  |  Posted: March 24, 2014

  • Feature on Carers - Mother + Daughter Barbara + Freya Smyth

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EPILEPSY is something that can affect anyone, at any age and without any warning.

As part of Purple Day, which is the international event for epilepsy awareness, one South Derbyshire mother has spoken about how she has coped with her disabled daughter who suffers from the illness.

Mail reporter ROB SMYTH spoke to Barbara about the everyday challenges she faces with 19-year-old Freya.

“FOR many people, seeing someone have an epileptic fit can a very traumatic experience but for me and my family it becomes as every day as waking up in the morning and going to bed in the evening.

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These were the words of Barbara who is the full-time carer to Freya, a young woman who has battled epilepsy nearly all her life.

Epilepsy is a condition that affects around 50 million people worldwide. 600,000 of whom live in the UK, including 112,000 children and young people.

It can affect anyone at any age and on average around 87 cases of epilepsy are diagnosed every day (approximately 32,000 cases of epilepsy each year).

Freya’s case is one that is similar to so many others with the condition but still one that shows the dramatic impact it can have on the sufferer and their family.

She has suffered from a rare form of epilepsy called Lennox Gastaut syndrome since birth — a condition that can see her suffering more than 40 seizures a day.

A few years ago she was also diagnosed with Rett syndrome — a neurological brain disorder which sees repetitive hand movements, such as wringing and/or repeatedly putting hands into the mouth — and small hands, feet and head.

Freya also suffers from scoliosis of the spine — a condition that meant that she has had to undergo a major operation to have metal rods inserted into her back.

She has also had a Vagus Nerve Stimulus (VNS) implant fitted to try to control her seizures, a process that means that she has to have a new battery fitted every few years.

She is unable to communicate, cannot walk and has to use a wheelchair. She also has profound learning difficulties.

As Freya cannot perform simple actions on her own, Barbara is responsible for all of her care — from getting her up, washing, dressing and feeding her.

She said: “Freya has seizures constantly. Since she was born she has never slept through the night and needs one-to-one 24-hour care.

“It’s hard and a struggle but any problems or doubts are wiped away when you see her little smile appear — it’s the best feeling in the world.”

Barbara is Freya’s full-time carer and helps with all tasks from taking her for regular hospital visits to her daily feeds through a gastric tube in her stomach.

She continued: “The fact that Freya has had this her whole life has meant a daily dose of medicines that often seems like it is never ending.

“This has all been to get her condition under control but, when it got too bad, she had to have her VNS implant put in to try and help regulate her fitting.

“It is amazing the impact this has had. It has changed her life for the good and hopefully gives her a little bit of respite.”

Although epilepsy forms only a part of the multitude of problems Freya faces, her condition means that she faces a battle every single day of her life.

Barbara says that ever since he had her 19-year-old daughter, who is a twin, her view on disabilities has altered dramatically and she hopes that events likes this national awareness bid help dispel myths that people have.

She added: “Me and my family always say it. You never pay any notice to something until it has an impact on you and this was the case when Freya arrived.

“You understand things more and it allows you to know learn about what is going on with other people.

“When Freya has a seizure, it is something that is not out of the ordinary to us, it is part of our lives. But I understand that too many people it can be scary.

“Just remember that young woman, or anyone else, that you are starring at is a person and please try to show some restraint and respect for her and anyone else.”

To find out more about the awareness day and epilepsy, please should visit www.epilepsy.org.uk

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