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Ella-Grace - why we were right

PUBLISHED: 15:06 07 January 2010 | UPDATED: 07:16 02 July 2010

Ella-Grace Honeyman.

Ella-Grace Honeyman.

Victoria Leggett

The mother of Ella-Grace Honeyman said frightening complications with her rare brain condition have justified their decision to raise thousands of pounds for treatment abroad.

The mother of Ella-Grace Honeyman said frightening complications with her rare brain condition have justified their decision to raise thousands of pounds for treatment abroad.

Laura and Ryan Honeyman opted for private operations overseas - costing more than £40,000 each - after their two-year-old daughter was diagnosed with vein of Galen malformation in June 2008.

It has led to major fundraising drives every time the little girl needs treatment which have become increasingly urgent as more complications with her illness have been discovered.

During her last surgery to seal leaking blood in her brain in November, Dr Alex Berenstein discovered a series of life-threatening blood clots which have severely restricted drainage in her brain.

Mrs Honeyman, of Hevingham, near Aylsham, said the problems had proved they made the right decision.

She said: “We have no doubt she wouldn't be here if she wasn't seeing the best surgeon. He's been doing it for 20-odd years. He's seen over 500 cases.”

The surgeon has hailed Ella-Grace's case “unique” because of the complications. The little girl's mum said, although the treatment would have been available on the NHS, they had had to go to the most experienced surgeon.

She said: “He was even struggling with what to do with this last trip and he's the world's best. That speaks volumes.”

The family was able to enjoy Christmas, with Ella-Grace looking well as she ran around with her sister Niamh and played with new toys.

Granddad Ian Honeyman said: “Because it was happening slowly over the summer, we didn't realise how far down hill she had gone. Now she's had this treatment, she's the best she has been for a year.”

But with the festivities now over, the toddler's parents are bracing themselves for what the next 12 months will bring.

Doctors have warned them Ella-Grace is likely to be in and out of hospital this year as they treat the leaking veins as aggressively as possible.

Mrs Honeyman said: “They can't sit back on it as much as they had hoped. That's worrying. We're worried about how we're going to sustain fundraising.”

The next surgery is due to take place on March 3. Ella-Grace's granddad said mammoth fundraising efforts for the last operation collected so much they had a good head start for this one.

Former Norfolk man Michael Hill, who now lives in America, also helped negotiate more than $9,000, or nearly £6,000, off the hospital fees which will be put towards the March treatment.

To give to the Ella-Grace fund contact Steve Read on 07949 871013 or 01603 722294 or visit www.lifeforellagracefund.co.uk. Cheques payable to The Ella-Grace Fund can be sent to Mr Read at 77 Salhouse Road, Rackheath, Norwich, NR13 6PD.

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