Hevingham family’s sadness as Ella-Grace Honeyman’s operation has to be abandoned
08:55 30 July 2014
Archant Norfolk Copyright
An operation on a seven-year-old Norfolk girl in the US had to be abandoned by doctors when it became too risky.
Ella-Grace Honeyman was diagnosed with a rare brain condition, Vein of Galen malformation, just before her first birthday.
The youngster travelled with her family to New York last week for what they hoped would be her final operation.
But seven hours into the operation, which the family hoped would finally seal the final leaking blood vessels in her brain, it had to be abandoned.
Ella-Grace’s mother, Laura Honeyman, 35, now wants her daughter to undergo gamma radiation therapy, but she said she was not sure it was available in the UK.
She said: “The final cure is proving to be elusive.
“As a family, we were so sure that it would be over after this operation, so it’s an anti-climax.
“But the doctor could not get close enough to seal the blood vessels in her brain, and I was not prepared to take the risk, so to glue it now is a no-go.
“We’re so grateful to everyone that helped raise the money for her operation in America.
“It’s frustrating, but bear with us. What happened could not have been anticipated, so the fund-raising was not a waste of time. The doctors are doing their best.”
The operation was Ella-Grace’s eighth and the Hevingham family needed to raise thousands of pounds to cover the costs.
The youngster’s previous US operation had also failed as an artery had ruptured. But since that operation in 2012, Ella-Grace’s health has been stable and she has lived a relatively normal life with her parents, nine-year-old sister Niamh and three-year-old brother Rylan – even attending school at St Francis of Assisi Catholic Primary School.
Her condition, which affects 10 to 12 children in the UK each year, 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.
The family was initially led to believe the condition was inoperable, but two doctors in New York and France, where Ella-Grace was originally treated, developed a procedure that changed this.
To donate, or to find out more, visit www.lifeforellagracefund.co.uk or contact Steve Read on 07949 871013 or Mrs Honeyman on 07590 498143.
Do you have a fundraising story? email firstname.lastname@example.org