Lafora Disease makes young man's life, a nightmare!

FRIENDS of a West Lothian woman have joined together to raise funds to help treat her son’s rare illness.

Alice Morgan (50) originally from Broxburn, has an 18-year-old son, John Sharp, who suffers from Lafora Disease.

The epileptic condition, which is believed to affect only one in a million people, manifests itself during the teenage years and causes seizures and eventually dementia.

John first became ill three years ago while on a camping trip.

He suffered a seizure while out swimming and had it not been for the quick thinking of his friend, it’s feared he may have drowned.

Initially, John was treated for epilepsy but tests revealed the teenager is suffering from Lafora.

There is no cure, but research is taking place into the illness, which is caused by a genetic mutation.

Alice, who now lives in Jersey, has set up the charity Hope for John and aims to raise £80,000 to help fund another year of study into the condition.

As part of that effort, Alice’s friends in West Lothian have organised a race night.

Connie Madden said: “There is no government funding towards the research so its down to people to fundraise and collect money.

“Alice has set up a registered charity to help raise funds and in the last few months it has raised £23,000.

“Alice is still well-known in West Lothian and has a lot of friends here, so myself and friend Bernadette Sweeney decided to organise a race night.”

The women’s efforts are paying off with several companies giving their support by sponsorship.

But Connie said that it’s vital they have a good turnout at the event at St Philomena’s in Winchburgh on Saturday, April 18, to ensure that as much cash as possible is raised to help John.

She said: “Local pubs in Broxburn have sponsored races and we are now selling the horses. We have been sending out letters to companies asking for their support and have had a good response so far, but obviously we would be glad of any other help on offer.

“And hopefully we will sell lots of tickets for the race night and raise vital funds.”

Alice, Connie and Bernadette have been friends since they went to school together at St Mary’s Academy in Bathgate.

And Alice explained she is pleased by the support of her friends in helping raise funds since watching her son’s suffering is very painful to watch.

She said: “Sometimes John barely talks, can hardly hold a glass in his hands, can no longer read a book and takes a lot of time and energy to write a simple word.

“He also has to be helped to get fed and dressed.

“The only Godsend is that he seems quite unaware of it all. Sometimes when | look at him, he seems so sad it is heartbreaking.

“And then I say something and after a pause he gets it and lets out a huge laugh.

“I have to hold onto the hope that one day he will be laughing all the time and a cure will be found and John and all the other children like him and any future children, unfortunate enough to be cursed with Lafora, will never have to go through this ordeal.”

For more information on Hope for John, or to buy tickets for the race night, local people should contact Connie Madden on 07880 765606 or Bernadette Sweeney on 01506 500694.