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Edinburgh Live
Edinburgh Live
National
Kris Gourlay

Young East Lothian girl's 'unusual' movements diagnosed as 'severe' epilepsy

A young East Lothian girl who was born a happy and healthy baby before starting to make "unusual" movements was later diagnosed with severe epilepsy.

Sammy McLeod, now 20, underwent major brain surgery in 2013 but unfortunately, the operation wasn't a success. According to mum Alison, she never got to see her daughter when the became ill as she was 'surrounded' by doctors.

As well as severe epilepsy, Sammy has also been diagnosed with cortical dysplasia, autism and global developmental delay.

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Alison says that getting Sammy out of the house is sometimes a struggle, but she discovered a knack for dancing after being transferred to Edinburgh Sick Kids.

Despite being over the age of admission to the hospital, 16, Sammy still takes part in the Edinburgh Children's Hospital Charity's 'Step Out' dance classes in Musselburgh and enjoys dancing with children and young people of all ages and abilities.

Reflecting on Sammy's earlier years and when she first noticed something wasn't quite right, Alison said: "We hadn't been in A&E long when she had a seizure and all hell broke loose.

"She was surrounded by doctors. I couldn't see her anymore because they were all around her. It felt like the whole world turned upside down and we knew something serious was happening.

Sammy was diagnosed with epilepsy, autism, cortical dysplasia and global development delay. (Chris Watt Photography)

"The next four weeks were a blur. Sammy was having so many tests and we felt completely lost. She was then in and out of hospital a lot over the next couple of years. In 2013, she underwent major brain surgery but unfortunately the operation wasn’t a success, and her seizures have been very bad for long periods since.

"She has drop seizures and myoclonic seizures, among others, which are especially difficult to manage."

Sammy previously had to stop attending a running bike group and horse riding because of her seizures, so Alison was unsure how she would get on at ECHC’s dance classes.

Alison continued: "When her seizures are bad, Sammy is unable to stand or walk and is very reluctant to move at all as she fears being unsteady or falling. But when we went to the dance class, she came alive.

"It was the first time she had been out of her wheelchair in as long as we could remember! She was so keen to join in. I was utterly amazed.

"Getting Sammy to go anywhere can be a real challenge, sometimes she doesn’t even want to go into the garden. But every week she looks forward to going to the dance group. It’s a safe and happy place and there is such an atmosphere of support. It gives her something to really focus on and she gets so excited to practice the moves.

"It’s beneficial for her mentally but also physically as it works her muscles and helps her balance. Even I go to the group feeling relaxed, which is unusual, because I know we are 100 per cent accepted.

"It’s so inclusive – a really ‘can do’ environment. She has quite a few seizures during most classes but she wears a helmet and I just lay her down until she comes out, then she gets up and carries on.

"Nobody is fazed, no big drama. To see her enjoyment is wonderful and to watch her moving is just so nice. It’s as if she’s so eager to take part that she forgets any worries about falling or having seizures that might hold her back."

Rosalind Sanderson, arts coordinator at ECHC, said: "Our dance classes give children and young people who can’t access mainstream dance groups the opportunity to come together and make new friends.

"We tailor the classes to the needs of those attending and all ages, stages and abilities are welcome.

"It’s especially wonderful to see how the dance classes have helped Sammy to move, but most importantly to relax and to have fun. Even the most gentle exercise can be so beneficial to lifting a child’s mood and spirits, and having the ability to take part in a dance class like their peers can be a real confidence boost.

"It is only thanks to donations from our wonderful supporters that we can continue to bring the joy of dancing both into the hospital and to the community, and make a life-changing difference to young people like Sammy.”

To donate to Edinburgh Children’s Hospital Charity, visit: www.echcharity.org/donate

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