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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

Ella-Grace Honeyman celebrating her 11th birthday with her family at her home in Hevingham. Picture: DENISE BRADLEY

Ella-Grace Honeyman celebrating her 11th birthday with her family at her home in Hevingham. Picture: DENISE BRADLEY

Copyright: Archant 2018

On a sunny Sunday afternoon, a young girl celebrated her 11th birthday with her family in the back garden.

Ella-Grace Honeyman opens her presents as she celebrates her 11th birthday with her family at her home in Hevingham. Picture: DENISE BRADLEYElla-Grace Honeyman opens her presents as she celebrates her 11th birthday with her family at her home in Hevingham. Picture: DENISE BRADLEY

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.

Ella-Grace Honeyman, centre, celebrating her 11th birthday with her family at her home in Hevingham. From left, grandmother Bev, holding cousin Rory Holmes; Grandfather Ian; dad Ryan; sister Niamh, 13; mum Laura; brother Rylan, seven; and grandmother Trudi Hussey. Picture: DENISE BRADLEYElla-Grace Honeyman, centre, celebrating her 11th birthday with her family at her home in Hevingham. From left, grandmother Bev, holding cousin Rory Holmes; Grandfather Ian; dad Ryan; sister Niamh, 13; mum Laura; brother Rylan, seven; and grandmother Trudi Hussey. Picture: DENISE BRADLEY

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.

Ella-Grace Honeyman celebrating her 11th birthday, pictured with her mum Laura, at their home in Hevingham. Picture: DENISE BRADLEYElla-Grace Honeyman celebrating her 11th birthday, pictured with her mum Laura, at their home in Hevingham. Picture: DENISE BRADLEY

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.

Ella Grace Honeyman pictured with her mother Laura back at home after going to New York to have a lifesaving operation.
She has got Vein of Galen malformation.

Picture: James Bass
Copy: Sam Emanuel
For: EN News
Evening News © 2008  (01603) 772434Ella Grace Honeyman pictured with her mother Laura back at home after going to New York to have a lifesaving operation. She has got Vein of Galen malformation. Picture: James Bass Copy: Sam Emanuel For: EN News Evening News © 2008 (01603) 772434

Ella-Grace Honeyman at home in Hevingham as she gets ready to head out to New York for her latest life-saving operation.
Photo: Simon Finlay
Copy: 
For: EDP News
EDP pics © 2009
(01603) 772434Ella-Grace Honeyman at home in Hevingham as she gets ready to head out to New York for her latest life-saving operation. Photo: Simon Finlay Copy: For: EDP News EDP pics © 2009 (01603) 772434

Ella-Grace Honeyman is hoping that next year will see the last of the operations she needs to get better and be able to have a normal life with mum and dad Laura And Ryan and sister Niamh and brother Rylan.
Photo by Simon FinlayElla-Grace Honeyman is hoping that next year will see the last of the operations she needs to get better and be able to have a normal life with mum and dad Laura And Ryan and sister Niamh and brother Rylan. Photo by Simon Finlay

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