WHEN little Freya Dawes died at the age of five she left gaping hole in the lives of her family.

She was born in 1999 with Sturge Weber Syndrome a disorder which causes abnormalities in the body.

The illness made it difficult for Freya to see or hear, and doctors said she probably wouldn't see her first birthday, but Freya exceeded everyone's expectations.

"She was very handicapped," said mum, Sarah-Jayne, 43.

"Because of that, looking after Freya became a full-time job, so when she died at Christmas in 2004 we were left with a big gap in our lives.

"She did look different from other children and it used to annoy me intensely when people would stare at us because they would see my son Tom who is a handsome young man and they would look at Freya because she looked a little different.

"I still have a lot of her things at home, all her drugs are still here, and I often find myself putting together her syringe. I have not forgotten she's gone.

"One of the things she used to love was when I played the saxophone.

"Music made a big difference to her life, and it always got a reaction from her, usually one of her beaming smiles.

"I believe it is an important therapy to other children who also have similar problems."

Now Sarah-Jayne, from Watchfield, near Swindon, is planning to launch a charity called FreyaBeya which aims to raise money to enable special needs schools to buy in live music.

"The arts are sadly very much forgotten within the narrow constraints of the National Curriculum," said Sarah-Jayne, "But FreyaBeya would give total freedom to teachers to introduce children to any type of music, allowing it to be child-led rather than curriculum-led."

"There is now music therapy available at the John Radcliffe Hospital at Oxford, which is brilliant.

"The children who have to stay in hospital really enjoy this facility and get a lot from it."

Now Sarah-Jayne, along with husband Steve, 45, is planning to hold a special music evening on Saturday, June 10 at Shrivenham's Memorial Hall.

She has invited along various local bands and groups and hoping to get the FreyaBeya charity kick-started.

"So far the response has been really positive and I think I have both Shrivenham and Watchfield behind me "We need £1,000 to actually start the charity and I am confident we can raise that on the night."

The family is also set to be the subject of a BBC documentary to be aired in the summer.