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Families fight for toddler

PUBLISHED: 10:14 19 November 2009 | UPDATED: 15:40 03 July 2010

The family of Norfolk toddler with a serous brain condition face a race against time to raise money for another life-saving surgery next month after her health suddenly deteriorated.

The family of Norfolk toddler with a serous brain condition face a race against time to raise money for another life-saving surgery next month after her health suddenly deteriorated.

The two-year-old Ella-Grace Honeyman took a turn for the worse three weeks ago and has been experiencing severe headaches and sickness ever since.

Last night, her mum Laura Honeyman said the family were battling to find about £12,000 in just 18 days ahead of a hastily arranged operation on December 7.

Mrs Honeyman, of Hevingham, near Aylsham, said: “We haven't got enough money. We don't know what to do. People have been amazing and we don't like to keep asking people to help all the time but, if we're going to get her the best treatment, we rely on people and their generosity.”

Over the past 18 months, people have dug deep to raise tens of thousands of pounds for the little girl's three previous surgeries.

Following an epic eight-hour operation in April to seal off a number of blood vessels with a sterile glue, her family had been told she would not need another until summer 2010.

But on Tuesday evening the little girl's American surgeon decided she now needed treatment as soon as possible.

Ella-Grace's mum, 30, said: “It's come as a huge shock. I'm all over the place and a lot of people feel like that.”

The last surgery in April cost about £45,000. They already have £33,000 and thought they had at least another six months to find the remaining £12,000, but are now having to work flat-out to make up the short fall.

The toddler, who has a five-year-old sister, Niamh, suffers from vein of Galen malformation - where blood vessels channel fluid to her brain.

She was first diagnosed in June 2008 and has since undergone three high-risk operations to treat it.

After learning about the condition, her parents, 30-year-olds Laura and Ryan, chose to send her abroad to be treated by the most experienced doctors.

The operations would be available on the NHS, but UK surgeons have rarely had to treat someone with Ella-Grace's illness. The decision to send her abroad, to “put her in the best hands”, means the family have to pay for the treatment themselves.

The Honeymans have been dogged by problems along the way. The original surgeon, who performed the first operation in France in June 2008, died just a few hours after treating Ella-Grace leaving the family in search of another doctor.

The little girl had a heart failure scare in January and suffered a seizure while on holiday this summer. Poor exchange rates have also hampered the fundraising efforts.

Mr and Mrs Honeyman realised her condition had deteriorated on October 29, when their younger daughter woke screaming. Since then, she has been suffering every other day and spent three days in the Norfolk and Norwich University Hospital last week.

Tests have revealed she has venous hypertension - too much pressure in her veins and a lack of drainage - as well as lesions on her brain.

As Ella-Grace was once again bed-bound on Tuesday, her mum said: “When she's poorly, she's really poorly, and I know it's going to keep coming. We can't stop the pattern until she's had the operation. I feel so helpless. It's so heart breaking. I'm worried having to wait is going to cause some brain damage.”

The toddler's granddad, Ian Honeyman, said, while the family had coped with the stress of the operations before, Ella-Grace's poor health was causing even more worry this time.

He said: “In the past, she's had the condition and we have treated it before it really affected her. This is the first time we are seeing her quite ill.”

Ella-Grace's worried mother said hopes of a fun-packed family Christmas were now ruined and she had no idea what the future would hold. She said: “We feel, as she's getting older, she's having more complications with it. I hope, once the treatment is done, she will feel so much better - but you never know what to expect with this condition.”

Ella-Grace's dad Ryan, captain of Cromer Town Football Club, will run in the City Of Norwich Half Marathon on November 29 to try to boost funds.

To donate to the Ella Grace fund, or to sponsor Mr Honeyman, contact fundraising committee chairman Steve Read on 07949 871013 or 01603 722294, or visit www.lifeforellagracefund.co.uk.

June 2008 - Ella-Grace is diagnosed with vein of Galen malformation. Fundraisers from the Sole and Heel pub in Rackheath launch a campaign to pay for the treatment.

June 26, 2008 - The Honeymans head to Paris for the first surgery.

June 27, 2008 - Dr Pierre Lasjaunias, Ella-Grace's French surgeon, dies from a heart attack.

November 5, 2008 - The second operation is carried out in New York by Dr Alex Berenstein.

January 2009 - Ella-Grace begins playschool. Her family fear she has gone into heart failure later that month but tests give her the all-clear. Poor exchange rates hamper fundraising.

April 5 2009 - The toddler undergoes a third successful operation which takes eight hours. Doctors hope she will need just one more surgery.

July 2009 - Ella-Grace has a seizure while on holiday in Kent.

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