December 12 2013 Latest news:
By VICTORIA LEGGETT
Wednesday, May 30, 2012
A four-day music festival this weekend will relaunch a fund-raising campaign in aid of a little girl with a rare brain condition.
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