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Ella Grace email version 30.04.14

The Ella-Grace Story

Ella-Grace Honeyman was born on the 7 June 2007 to Mum Laura and Dad Ryan, sister to Niamh who was born on 31 August 2004.

At first Ella-Grace developed normally and seemed a happy, bright little girl.  After a few months, Mum Laura, noticed prominent veins on the top of her head and, although her GP felt there was not a problem, just before her first birthday, a second opinion was sought at the Norfolk and Norwich University Hospital (N&N) and it was felt that an MRI scan was justified, Three days later and just a few days before Ella-Grace’s first birthday, Laura received the phone call that was to change the families life forever.  They were told that Ella-Grace had a massive aneurism right in the middle of her brain and it had been decided that this was inoperable due to it’s position and the damage that would be caused. The whole family was shocked and devastated but at a get together later that day amongst the family and her consultant, they vowed to leave no stone unturned in their fight to save their little girl.

In the days that followed it was discovered that Ella-Grace had a very rare condition called Vein of Galen Malformation.  Pressurized blood from the main artery leading to the brain was escaping unchecked into the thinner walled veins, causing them to expand close to breaking point.

We were told that there had been a previous case locally and the mother of the little girl, Vicky, worked at the N&N as a midwife and was happy to talk to us.  We spoke to Vicky that evening and were immediately overwhelmed by her knowledge, passion and desire to help us.   She explained that whilst just a few years ago most children with this condition died at an early age as operating was not an option, this was no longer the case.  Vicky told us that two doctors, one in Paris and one in New York, had pioneered a procedure whereby they could gain access to the inside of the brain by means of the arterial system and once there they were able to seal off the leaking capillaries.  Vicky’s daughter had been treated several times in Paris by Dr. Pierre Lasjaunias and she was in good health.  The National Health Service paid for this treatment, as the procedure was not carried out in the UK at that time.

Vicky was an enormous help to us at this difficult time, welcoming us into her home and answering our never ending list of questions.  Tragically, Vicky passed away in 2012 but our family will always be grateful for her friendship, love and advise and for lending us her daughter’s lucky bear that has now witnessed all our visits to theatre.

 

We contacted Paris, after sending an MRI scan, and were told that it was a matter of the utmost urgency to get Ella-Grace treated as soon as we could.  Although Pierre was fully booked, he scheduled our operation for the following week; following on from another child he was already due to treat that day.  He confirmed that he had treated several children over the past 20 years, paid for by the NHS, and other children from around the world.  We applied for funding the next day but were stunned when we were turned down because there was now a new facility in place at Great Ormond Street Hospital (GOSH) that offered treatment to VGM patients.

The next day we travelled to GOSH to meet an amazing man who gave us some surprising advice.  He explained that he had carried out very few of these procedures in the new unit with some success but admitted that, whilst he could attempt to treat Ella-Grace, due to the complexity of her case she would be better treated by the experts in Paris/New York who have far more experience and if it was his daughter he would have no hesitation in sending her to Paris.  Looking back, with what we now know we are so grateful that, without any personal ego, he put our child first and guided us to Paris.  In the following ten minutes we learnt of the terrible risks associated with the procedure.  Firstly, just guiding the tiny catheter into the brain risked damaging the tiny vessels and could cause a fatal hemorrhage.  Then, when a safe area to release the superglue that they use to block the leaks was reached, the amount of glue used was critical.  Not enough and it would pass through to the heart and could again prove fatal and too much and the catheter would stick to the vessel causing a hemorrhage when it was withdrawn.  He had a tear in his eye when he told us that this is what happened the last time he operated.

The doctor then went on the explain that Ella-Grace’s case was far more difficult than others as her body had shut down both her jugular veins in the womb and instead had reversed her blood flow, draining blood over the top of her head leaving a very delicate balance between pressure and drainage.  Finally he told us that if we were to take his advise and go to Paris we would now have to fund the trip ourselves.  We have never disclosed this conversation to the media and every report about Ella-Grace has stated that the operation was available in the UK but that we had chosen to go abroad as they had more experience.  We are only prepared to divulge this information now because this doctor is no longer involved at GOSH.  So, the decision was made easy for us and we got a quote from Paris the next day of £15000 per operation plus travel expenses with 6-10 operations required meaning we were looking at £90,000-£150,000

Friends heard of Ella-Grace’s plight and soon set up a charity that they called Life for Ella-Grace Fund, www.lifeforellagracefund.co.uk
With donations from friends and family we reached the cost of the first operation in time and with the help of a generous free trip on Eurostar we arrived in Paris the afternoon before Ella-Grace’s first operation.  The Bicetre hospital was old but clean with tiny cubicles set aside for each sick child but at last we had hope that one day Ella-Grace would be cured.

We wheeled her cot to the theatre and, after a fight with the anesthetist more befitting a 10 year old than a one year old, the procedure was under way.  What followed was maybe the longest period of time of our lives as we waited for news.  At last Pierre came through, smiled and said, “She’s fine.”   He explained that they had sealed some of the larger leaks but it was going to be a long and difficult job and several more procedures would be required.  We shook hands saying “Thank you, Thank you” over and over again when all we really wanted to do was give him a huge hug of gratitude.  “See you in a few months time” he said as he went back to the theatre.  It scarcely seems possible that this was the last time we would ever see him alive.

The very next day he flew to Geneva and had a massive heart attack at a conference and, despite the efforts of the many doctors there, they were unable to save him.  This incredible man had dedicated his life to saving the lives of these small children, giving so many parents hope when they had previously had none.  Vicky rang us the next day with the news after we had returned to the UK and we, like her, were devastated by Pierre’s death.  It was scarcely believable and almost impossible to take in the news.  After saving more than 350 children he had found the time to save just one more, our one-year-old Ella-Grace.  We will always be indebted to Pierre and his team and will never ever forget him.

A few weeks later at a fundraising meeting it was time to discuss where we went from here.  The easy answer was to go to London for the next operation but we all knew we owed it to Ella-Grace to get her the best possible care after the advise we had been given but New York seemed a million miles away and a crazy idea.  However, we all knew we had to try and rang The Roosevelt Hospital the next day.  We already knew that Dr. Alex Berenstein had pioneered the treatment with Pierre and had over 20 years experience with children from all over the world.  We were told that he and his team had an incredible success rate in an ultra-modern facility but that the minimum cost was sixty-one and a half thousand dollars per operation.   Our fundraising target that had always seemed difficult now seemed totally impossible but we had to try.
The fundraising team, based at the Sole and Heel Pub in Rackheath, worked endlessly with sponsored bike rides, parachute jumps and collection tins and managed to raise £30,000 in the first four weeks, thanks also to the backing of our local papers, the Eastern Evening News (EEN) Eastern Daily Press (EDP) who were instrumental in bringing Ella-Grace’s illness to the wider population.

Scans were sent to New York and after consultations on the phone with Dr. Alex, a second operation was booked for the 12th November 2008.

We arrived in New York on the 10th November and met Dr. Alex the next morning.  He confirmed the difficulty and complexity of Ella-Grace’s already very rare and life threatening condition but explained that, like anything in life, if you do something every few months you could eventually become quite good at it but if you did it every day, although if didn’t quite become routine, it was certainly possible to be as less risky as this complicated procedure can be.

We woke very early on the 12th and Ella-Grace went into theatre at 9a.m.  6 hours of worrying later, we received the news that the operation had been a success but were told that the doctors would only be able to close a small amount each time due to the unique, delicate balance with Ella-Grace’s venous drainage system.  We were advised that another operation would be required ASAP and this was booked for the 8 April 2009.

Fundraising was now a major problem but with huge support from the EDP, an appearance on Anglia Television and backed by the tireless work of the fundraising team, the target was again reached.

From the hundreds of letters of support we received after the many EDP articles it became clear that Ella-Grace’s plight had touched the hearts of many people in Norfolk.  It would be impossible to list everyone who helped us here but Ella-Grace’s family will always be grateful for their support.

The third operation on the 8 April 2009 again went well although there were some post op concerns about the reverse blood flow in Ella-Grace’s drainage system.  As a result of this further complication it was decided not to carry out a further procedure for 12 months.

With a 12 month break from visits to New York, Ryan and Laura decided to take Ella-Grace and sister Niamh on their first family holiday.  In July 2009, with the help of an off-season newspaper promotion, they drove to a campsite in Camber Sands in Kent.   The family could at last enjoy time together and after all the worries of the previous 12 months the girls were able to enjoy some time swimming, playing and laughing at the evening shows.  The day before they were due to come home Ella-Grace started to feel unwell and suddenly her eyes rolled back in her head and she was totally non responsive.  It appeared that she had gone deaf and blind and it was feared that she had had a stroke.     An ambulance was called and she was rushed to a local hospital where, after a phone call to New York, a CT scan was carried out and it was confirmed that Ella-Grace had experienced a vacant episode seizure.  Eventually the seizure subsided and the family returned home with advice to monitor Ella-Grace carefully.

In October whilst getting ready to go trick or treating Ella-Grace experienced a severe headache and vomiting, this was the start of a significant deterioration.   By mid November the family were extremely worried.  Ella-Grace was convulsing, with severe headaches and vomiting every other day and was in and out of hospital.  An MRI and CT scan were sent to New York and we immediately received a call telling us that there was calcification, the result of significant venous hypertension on the brain.  This was caused by a major build up of pressure and a serious lack of drainage from her brain to her heart and it was imperative that we get to New York within a week.

We checked our funds and realised we were nowhere near the figure needed and time was running out.  We spoke to the EDP and told them about Ella-Grace’s desperate situation and the very next day they carried the headline that still makes us feel emotional when we think about it. “Ella-Grace Needs Your Help.”  The response was unbelievable. We were flooded with donations and reached the target within days.

On the 7 December 2009 after an MRI scan and Angiogram, the normally unflappable Dr. Alex spoke to us.  “You were right to be worried because I am extremely worried, Ella-Grace has lost half of her drainage system due to blood clots and her situation is now critical but we will do everything we can although the outcome is now touch and go.”  Eight hours of waiting and not knowing if we would ever see our precious little girl again was finally ended when an exhausted doctor told us that it had gone as well as could be expected but another operation may be needed in 2-3 days. He explained that the treatment of this disease is like playing a game of chess; you make a move and wait for the disease to respond.  The disease was winning and we needed to get ahead of the game.   The news the next day was much better and within 2 days Ella-Grace was back to her fighting best.  We have always marveled at her ability to take everything thrown at her in her stride and still manage to smile through adversity.
After further successful procedures in New York in March and July 2010 we were near to closing all the original leaks with one very dangerous and difficult to access problem area remaining.  The decision was made to wait for a year for the leaking vessel to grow to help with access and reduce the very real risk of a brain hemorrhage should the tiny artery fracture.

With the recession in full flow fundraising was becoming more and more difficult but again the people of Norfolk and the amazing fundraising team managed to raise the funds required and in September 2011 Ella-Grace travelled to New York for what was to be her most dangerous operation to date.  After a pre-op examination it was revealed that she had an infection that meant the risk of surgery would be far too high and the family returned to the UK the next day.
The operation was re-scheduled for 20 April 2012 but the family’s worst fears were realised when, during the procedure, the tiny artery that the catheter was inside ruptured.  This eventuality would normally prove fatal but due to the skill of the team in theatre the rupture was sealed almost immediately.  Although the family were aware that this was always one of the biggest risks with the procedure they had to face up to how close they had come to losing Ella-Grace.

It was explained that the leak still needed to be sealed, as Ella-Grace’s drainage problem would become worse as she grew older and the leaking pressurized blood was using space that her brain needed to avoid the build up of fluid that could prove life threatening.  However, the decision was made to postpone another attempt for 2 years.  During this period, Laura and Ryan enjoyed some normality and welcomed a third child into the family, Rylan, who had been put on hold previously during those difficult years.

Today, Ella-Grace now attends school but is having difficulty retaining information, manipulation of information, lacks the ability to concentrate for more than a few minutes at a time and tires very quickly due to having to work twice as hard as her fellow classmates.   Her saving grace is that she is very articulate, her language skills are above average and she is very popular with her classmates.  Despite additional one to one tuition, the school has decided to pursue a statement of educational needs to help support her learning going forward.

After discussions with New York it has been decided to operate again in July 2014.  Throughout our cross Atlantic trips Virgin Airways have from day one helped us by reducing the price of our flights and given us flexibility with our return trips.  We are very grateful.  The family has discussed the option of not trying again but know that eventually this final leak will prove too much for Ella-Grace’s delicately fragile drainage system.

The original fundraising chairman, Brian McKenna, passed away after a long illness and Ella-Grace’s family will always be indebted both to him, his fellow committee members and everyone who has helped in the last five and a half years.  We have little doubt that without the help, kindness and support of all these people Ella-Grace would not be with us today.  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 her life with such bravery that she deserves to be given every chance of a normal lie and her daily smiles make it all worthwhile.

Steve Read carried on Brian’s amazing work and is currently fundraising chairman.  Steve can be contacted on 07949 871013.
Other numbers:
Fundraising is continuing and any publicity would be appreciated.  Please feel free to reproduce any or all of the information above.

Thank you in advance

 

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