April 25 2014 Latest news:
Thursday, February 13, 2014
The family of a Norfolk youngster have restarted their fundraising efforts as she gets ready to face her latest high-risk operation.
Six-year-old Ella-Grace Honeyman, who was diagnosed with the rare vein of Galen malformation a week before her first birthday in 2008, will have the surgery in July.
The operation in New York will be Ella-Grace’s eighth so far and if successful will be her last - but the Hevingham family need a further £20,000 to cover the costs.
Their worries about the difficult procedure are high, after an artery rupturing in the last operation meant they nearly lost Ella-Grace.
Ella-Grace’s granddad, Ian Honeyman, said: “I think after we very nearly lost her last time it would be so easy to bury our heads in the sand and not go, but long-term she has no chance of surviving without it.
“We try and focus on the positives and we walk around Central Park the day before the operation and try and focus on that instead. It’s a pretty traumatic few days for her.”
Since the last operation two years ago Ella-Grace’s health has been stable and she has lived a relatively normal life with her parents, nine-year-old sister Niamh and two-year-old brother Rylan, even attending school at St Francis of Assisi Catholic Primary School.
Laura Honeyman, Ella-Grace’s mum, said: “It’s been nice to have 18 months to be a normal family. Every day we don’t know what we are going to contend with, but thankfully as she has been stable we can function as though things are like most other families.”
She hoped that the surgery would help Ella-Grace’s learning at school. She said: “Now that she is having some learning issues, we are hoping this will be a breath of fresh air to her brain. In the past she has had operations and her walking and talking has come on.”
Mrs Honeyman described her daughter as a “strong character” and a “battler”.
The condition, which affects 10 to 12 children in the UK a 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 were 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.
After being advised by doctors that these professionals were the best equipped to treat Ella-Grace, the family decided to do what they could to make it a reality.
Mr Honeyman said: “We were once asked if it was all worth it and if we should have put Ella-Grace through these operations rather than let nature take its course. The answer is definitely yes. Ella-Grace has fought for life with such bravery that she deserves to be given every chance of a normal life and her daily smiles let us know that it has all been worthwhile.”
■ To donate or to find out more about Ella-Grace’s story visit www.lifeforellagracefund.co.uk or contact fundraising Chairman Steve Read on 07949 871013.
■ Do you have a fundraising story? email firstname.lastname@example.org