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Wales Online
Wales Online
Health
Katie-Ann Gupwell

Rare condition sees boy, 10, suffer multiple seizures - but he wants to fulfil a simple dream

Meet the little boy who is one of only a handful of children in Wales to be diagnosed with a rare condition, but is desperate to fulfil a simple dream.

Just like many young boys his age David Lewis, 10, loves watching football, Lego and making friends.

More than anything he wants to be able to join a cycling club, but he needs some help to get there.

This is because David was born with a rare genetic condition called Glucose Transporter Protein Type 1 Deficiency Syndrome. It's a rare genetic condition that impairs brain metabolism.

Essentially it means glucose isn’t transported properly to the brain, which creates energy issues and prevents it from growing, developing, and functioning the way it should.

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Alongside this condition David also suffers from epilepsy, movement disorders, dyskinesia and low muscle tone. The young boy, from Cwmbran, is also non-verbal, autistic and has moderate to severe learning difficulties.

To help him move forward his family are hoping the kindness of people in Wales will help raise enough money to enable the family to purchase a specialist trike to enable him to experience a little more freedom, and help fulfil his dream of being able to join a local cycling club.

David pictured with Bethan and Geraint (Bethan Bodman)

David's mum Bethan Bodman, 34, explained: "David's life is quite restricted in terms of what he can do.

"We try to overcome as many obstacles as possible."

Bethan said he was diagnosed with Glucose Transporter Protein Type 1 Deficiency Syndrome in 2014, but he started experiencing multiple seizures a day from a very young age.

"At first they didn't know what it was," she added.

"They had to wait and put the pieces together to make the puzzle.

"He couldn't stand and talk or walk well. He still suffers with the seizures now, but they are not as frequent as they used to be.

"He now follows a Ketogenic diet - this is the only treatment for his condition. It's medically managed by a specialist team in Derby."

David has recently had a gastrostomy tube fitted to aid his high ketone diet, and he needs high levels of care and support on a daily basis. Long-term Bethan said it's this specialised diet that will help him.

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"They don't know what will happen because his mobility is deteriorating," she added.

"The thing is there are only a handful of children in Wales with the diagnosis, so he is very rare."

As David's energy levels and mobility are impacted by his condition, it's hoped having a specialised trike will enable him to travel further, and do something that he really loves.

Bethan said: "The reason he wants it is he wants to have the freedom. He wants to join a cycling club, and have the opportunity to make friends. He just wants a bit more freedom to make some friends.

"He tires very easily and he has a wheelchair.

"He likes to go to the Lego Shop in Cardiff. We always have to take his wheelchair with us as he can't walk very far. He also falls over quite a lot because his co-ordination isn't the best."

David is a huge Cardiff City fan (Bethan Bodman)

Even though David is limited in some ways Bethan said he is also a little "character", and makes the most of life the best he can.

He doesn't give up, gives everything his best shot and is football mad - especially when it comes to Cardiff City.

Bethan said: "He's very resilient and very brave. He tries his best with everything. He doesn't give up easily.

"He is a season ticket holder for Cardiff City with Geraint (Bethan's partner), and he watches Cardiff City most weeks.

"Lockdown has been difficult for all of us. He is just starting a new school now, and he's been excited about that. He's settled in really well, and he's really excited about it."

The family are looking to raise around £4,000 to purchase the trike. To find out more about how you can help David achieve his dream, visit the Go Fund Me page.

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