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Bubbly boost hope for Lexi

PUBLISHED: 20:09 26 November 2010

Hayley Wright and her family are organising a fundraising event for her daughter Lexi, who has a rare epileptic condition meaning she can have up to 90 seizures a day.

Hayley Wright and her family are organising a fundraising event for her daughter Lexi, who has a rare epileptic condition meaning she can have up to 90 seizures a day.

Archant © 2010

THE family of a Lowestoft toddler with a rare epileptic condition are raising money to buy specialist sensory equipment to help her cope with her illness.

Lexi Jay Wright, who turns two next month, started showing symptoms of West Syndrome when she was just a few days old, suffering from frightening seizures several times every day.

Now Lexi’s family are hosting an evening of entertainment to raise about £1,000 to buy specialist equipment that will assist her development.

Her mother Hayley Wright said: “I had a perfectly normal pregnancy, but shortly after Lexi was born I started to notice something wasn’t quite right.

“After numerous trips to and from the hospital, she was diagnosed with West Syndrome at seven weeks old.

“It is a rare epileptic disorder in infants, with the possibility of up to 90 seizures a day. The first time it happened it was very frightening. She would scream and her eyes would roll back and there was nothing we could do except cuddle her and let her know we were there.”

The rarity of Lexi’s illness made it difficult for doctors to treat and she was put on several different medications, including steroids, which has resulted in developmental delays and her progress is about one year behind other children.

She already has a standing frame and special seat to support her neck and back and attends physiotherapy and hydrotherapy regularly and it is hoped that having sensory equipment at home will help her to progress.

Mrs Wright said: “Ideally I would like to get her a 
bubble tube which vibrates 
so that she can feel the movement through her hands and feet.

“I would also like to get a light tunnel, which Lexi can get on a ball in front of so that the lights encourage her to move forwards.

“This sort of equipment will really help develop her brain and movement.”

A fundraising event planned for Beaconsfield Conservative Club, in Surrey Street, Lowestoft, on Saturday, December 4 is already sold out, but the family are still looking for more prizes 
for the raffle.

If you can give a raffle prize, or want to donate money, telephone 07581 004394.


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