In November 2007 we lost our 13 month old daughter, Ruby Ann, very suddenly to a rare brain disorder called the Vein of Galen Malformation. This is a major vein deep in the brain which can become greatly enlarged in babies and small children and is extremely hard to detect and subsequently to treat. Tragically for us, Ruby’s condition was not diagnosed until after her death. She had been in hospital for a week and doctors could not determine what was wrong with her. On the 26th November in the early hours of the morning Ruby had a seizure in my arms and she never regained consciousness. Try as all the Doctors did and they did try all that they could, there was nothing that could help little Ruby and later that evening, we her parents had to face the worst dilemma any parent could, to take the most awful heart wrenching decision to switch off her life support system.
We have held a Charity Ball and Auction on Mid Summer’s Eve in 2008, 2009 and 2011 with one scheduled for 21st June 2014. To date with other smaller events we have managed to raise a total of £90,000.00, and our aim is to reach over £150,000. The money raised so far has helped to provide a specialist brain scanner suitable for babies and young children which dramatically improves the quality of the pictures that can be obtained. This in turn greatly assists during major brain surgery, which is almost always required in these cases. Dr. Bhattacharya is currently trying to get funding for a specialist machine which cools the brain, thereby minimising trauma during surgery.