September 20 2014 Latest news:
Monday, June 16, 2014
The family of a Norfolk girl with a rare brain condition have almost reached their £20,000 fund-raising target for her next operation - with just six weeks to go.
Seven-year-old Ella-Grace Honeyman, from Hevingham, near Aylsham, was diagnosed with the life-threatening Vein of Galen Malformation just four days before her first birthday in June 2008.
Since the diagnosis, the youngster has faced seven high-risk operations abroad.
Her family launched a new fund-raising appeal earlier this year to raise more than £20,000 for Ella-Grace’s latest surgery, which will take place in New York in less than six weeks.
On Saturday, nearly 100 people attended a bowl-a-thon held at Namco Funscape, in Bowthorpe, for a final fund-raising push.
The malformation is an abnormal connection between a vein near the vein of Galen and arteries supplying the brain with blood. This connection allows blood to flow rapidly from these arteries into the vein of Galen malformaiton.
It flows faster and at a higher pressure than usual, which means that to ensure that good blood supply to the brain the heart must work harder.
Sometimes the heart may not be able to cope with this workload - or pressure on the brain can mean it does not develop properly.
Some children develop problems after birth while others develop them later in childhood.
Between 10 or 12 children are diagnosed with VGM each year in the UK.
It is often possible to completely cure the VGM and, where diagnosed and treated properly, the outlook is very good, with many children growing up to lead normal lives.
For more information visit www.nhs.uk
The event - which raised around £1,000 - even included a visit from Pacman to entertain the youngsters.
Laura Honeyman, Ella-Grace’s mother, said: “It was really, really good. We had 20 lanes given to us and 95 people came along. I wanted to try and do something fresh and something we could aim at families, but that we could keep cheap.”
Mrs Honeyman said that the bowl-a-thon had pushed the fund-raising total just shy of their £20,000 target.
“When we first started I wasn’t sure if we’d make it, but we are pretty much there now - maybe £2,500 short with a couple of events to come.
“I just can’t put into words just how grateful we are to everyone, because once again everybody has rallied around us and been really supportive. No words I can say or anything I can do to show how grateful we are.”
A 25-mile sponsored bike ride on Saturday, June 29 and a zumba-thon at the Hewett School in Norwich arranged on Saturday, July 12 have been planned to give the total a final boost.
For more information, to get involved with fund-raisers or to donate, visit www.lifeforellagracefund.co.uk