Birthday girl can finally celebrate after nine highly dangerous operations for rare brain condition
PUBLISHED: 08:00 11 June 2018 | UPDATED: 08:37 11 June 2018
Copyright: Archant 2018
On a sunny Sunday afternoon, a young girl celebrated her 11th birthday with her family in the back garden.
But of all the 11-year-olds in the country, Ella-Grace Honeyman has more to celebrate than most.
This month not only marks her birthday, but a decade since the first of nine highly dangerous and enormously expensive operations that would bring her close to death on multiple occasions.
Ella-Grace Honeyman, from Hevingham, was diagnosed with a rare brain condition, Vein of Galen malformation, just before her first birthday.
Her condition means that pressurised blood from the main artery leading to the brain escapes unchecked into the thinner walled veins, leading them to expand close to breaking point.
Although the condition affects 10 to 12 children in the UK each year, Ella Grace’s malformation was especially difficult, which meant the family was initially led to believe the condition was inoperable.
The Honeymans first went to a surgeon in Paris in 2008 who had performed hundreds of the operations Ella Grace needed, but just days after her first operation the surgeon died of a heart attack, with Ella-Grace his last patient.
The family then spent the next six years travelling to New York specialists to get Ella Grace seven separate operations, costing around £40,000 each.
In dire need of large sums of money, the Honeymans turned to the media, including the EDP to raise the funds to save Ella-Grace’s life, and the people of Norfolk turned out in force to help.
Ian Honeyman, grandfather of Ella-Grace, said: “Without the help of the people of Norfolk she wouldn’t be here, that’s for sure.”
Ella-Grace had what is hoped to be her last major operation in November last year, which having undergone the previous surgeries she was able to have with Great Ormond Street Hospital on the NHS. However she will still have yearly MRI scans to check her condition.
Ella-Grace said: “When you’re poorly you just have to cheer up and make the most of it because you can’t help the fact you’re sick. It’s not nice to feel that way and you can’t really do anything about it so you just have to be yourself and get through it.”
Currently at primary school, Ella Grace will start Framingham Earl High School in September.