A four-day music festival this weekend will relaunch a fund-raising campaign in aid of a little girl with a rare brain condition.

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Ella-Grace Honeyman, from Hevingham, has so far undergone seven high-risk surgeries to seal leaking blood vessels in her brain.

The four-year-old, who will be five next month, has vein of Galen malformation, a rare condition which was diagnosed just days before her first birthday in June 2008.

While a treatment in New York last month was hoped to be her last, doctors were forced to end the procedure early after an artery ruptured and had to be repaired.

Ella-Grace’s grandfather, Ian Honeyman, said: “The reason they had a problem last time is that the arteries they are operating on are so tiny – three times the size of a human hair – which is why we had this rupture. Children have died as a result of a rupture so we were very grateful that she was in the right place. The surgeons did a brilliant job repairing it almost immediately. She hardly lost any blood.”

But it means some tiny blood vessels in her brain tissue still need to be sealed. Her family, who chose to send the little girl abroad to ensure she was seen by the most experienced surgeons, now need to raise a further £40,000 to cover the operation.

Mr Honeyman said: “We realise it’s going to be quite hard to do it. We could have two years but, if her condition deteriorates at any time, we have to get her over there as quickly as possible. We’ve been caught short like this before when she had fits and had to be rushed to America.”

This weekend’s music festival, organised by fund-raisers and The Lodge, at Salhouse, aims to kick-start the fund-raising efforts and make the job a little easier.

Thirty local and up-and-coming bands have agreed to perform free and activities including a bouncy castle and raffle will aid the cause.

Salhouse Lodge, which hosted another fund-raising event last year which brought in £5,000 for the Ella-Grace fund, has offered its six-and-a-half acre site free with space available for camping. Bands set to perform include Luna Ghost, Red Leaf, Voodoo Ghost Town, Pyevarotti, We Can’t Dance and many more.

Ella-Grace and her family, including mother Laura, father Ryan, older sister Niamh and baby brother Rylan, will attend the event.

The festival begins on Friday evening and runs throughout the weekend, ending late on Monday.

Tickets for the festival are £2 per person, free entry for children, and £5 per pitch for campers. For more information telephone 01603 722294 or 07949 871013. To book a camping pitch telephone Salhouse Lodge on 01603 782828.

To donate to the Ella-Grace fund or find out more about her condition visit www.lifeforellagrace.co.uk

victoria.leggett@archant.co.uk

7 comments

  • I hope they respect their near neighbours and keep the noise at a reasonable level - and remember that some people need to get a good night's sleep.

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    Tudor Bushe

    Wednesday, May 30, 2012

  • no chance of that.wonder when she will get better?

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    bookworm

    Wednesday, May 30, 2012

  • for goodness sake if they keep you awake so what i wonder how many sleepless nights those poor parents have had? its not an event to do anything more than raise money for treatment needed for a child who is in need of some very specialised treatment instead of thinking about yourself have a heart you two moaners dig into your pocket and give a quid or two to help out and thank God that you and yours havent had to face the heartache the little girls family have gone through some people think before commenting next time

    Report this comment

    David Self

    Wednesday, May 30, 2012

  • So is it a prerequisite of charitable events that it's ok if a few people suffer?

    Report this comment

    Tudor Bushe

    Wednesday, May 30, 2012

  • bet i hear the racket.no good calling the council or cops.

    Report this comment

    bookworm

    Wednesday, May 30, 2012

  • people suffer and give money to charities all the time.or donate goods to shops .dont presume to judge others. noisy shows for 4 days is too much and too long.

    Report this comment

    bookworm

    Wednesday, May 30, 2012

  • plus the last poster does not know a thing about the other posters or how they may have suffered. i give money to cancer charities all the time. Peace is in short supply these days.

    Report this comment

    bookworm

    Wednesday, May 30, 2012

The views expressed in the above comments do not necessarily reflect the views of this site

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