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Ella-Grace Honeyman

Ella-Grace Honeyman was diagnosed with a rare brain condition ‘Vein of Galen Malformation’ (VGAM) just
4 days before her first birthday in June 2008.

Her first symptoms were pronounced veins on her head and forehead at around five months old. They progressively became very prominent and widespread and her head was found to be growing out of proportion to the rest of her body.Due to the very rare nature of the condition, it was six months before a diagnosis was made following an MR brain scan and clinical photos being shared with specialist hospitals.

We made our own investigations into the condition, were contacted by another family, whose child had the same condition and spoke with other members of the ‘vein of galen’ support group and members of the medical profession. All pointed us to the two world leaders in the treatment of VGM, Prof. Pierre Lasjaunias at The Bicêtre Hospital, Paris and Dr. Alex Berenstein at the Roosevelt Hospital, New York.

Images are produced by kind permission of the Medical Illustration Department, Norfolk and Norwich University Hospital NHS Trust, Colney Lane, Norwich, Norfolk, NR4 7UY

At this point we were in a desperate situation trying to get Ella-Grace to Paris and her treatment under way. During this period we were still learning of the extent of her condition. To preserve her own life, her body had shut down both her jugular veins. These will never re-open again without medical intervention. This procedure is still in its early stages of development and does not have a history of success at this time, therefore, she will always rely on her facial veins to drain blood away from her brain. We have to be extremely vigilant that she does not damage these ‘good’ veins. Each day we were living with a ticking time bomb and we were fearful that we would not get her to Paris in time. This period in our lives was extremely dark and we did not know how we would get through it. She was at great risk of suffering a brain hemorrhage, fits or worse. We cannot consider a life without Ella-Grace, her older sister Niamh and all the family adore Ella-Grace and we are a very close
knit family.

Ella-Grace underwent her first embolization on June 26th and came through safely. It was a huge relief; a huge weight had been lifted. We were aware that Ella-Grace would need further treatments and we were comfortable in the knowledge that her treatment had begun in expert hands and was now being managed. On returning to the UK we were notified that sadly Pierre had passed away and we were left in a state of shock. He had saved her life and then lost his own. We will never forget the importance of his impact on her life.

We then found ourselves in a position of fear again, knowing that she needed more procedures but no surgeon to carry them out. We arranged for her medical files to be sent to Dr Alex Berenstein in New York, with whom we discussed in length her history and his proposed care plan. Dr Berenstein worked closely with Pierre and was the other world leader in the treatment of VGAM. Ella-Grace had her second successful embolization on Nov 12th in New York and once again we are confident in the expertise and care of Dr. Berenstein and his team.

Ella-Grace is a loving, happy little girl who has bravely faced many challenges for her very young age. She is a real fighter and always has a smile on her face; she deserves the very best chance we can give her. Your help and support is appreciated by all the family and we hope that you will continue to support us.

Thank you again for all your help and support.

Laura & Ryan, Ella-Grace’s Parents.