Edward, Poppy, Sophie and I are taking part in the Northumberland Coastal Marathon to raise money for AVM awareness. 

In July 2014, My sister Amy was working and living in Sardinia when she fell ill, thinking at first it was sunstroke after seeing a local doctor. On the fourth day after beginning to feel a little better, she woke up and collapsed almost immediately clutching her head in severe pain. Luckily the Grandmother of the little boy she was looking after who was away on holiday found her and was able to drive her to hospital in Olbia where she was transferred to Sassari hospital where she was put into a coma for three days. She had had a Subarachnoid Haemorrhage from a right parietal/occipital Artero-Venous (AVM). Mum and dad flew out immediately and were told she had a 50/50 chance of surviving. Once her condition was stable and an emergency operation was taken place, after two weeks in Sardinia, she was flown over in a low pressured plane to the RVI in Newcastle where she spent four weeks in the High Dependency Unit where she underwent numerous operations, one including a procedure in which a shunt was placed for Hydrocephalus (excess fluid in the brain). At the end of September that year, she then went down to Sheffield where she underwent Radiosurgery also known as the Gamma Knife, used to treat 70% of AVMs. This procedure seals the malformed blood vessel but takes two-four years to work. 

After a year recovering at home, Amy was then able to get back on her feet and move to Salisbury where she started her Fine Art Atelier Course however a regular pattern of migraines, shunt pains, vision disturbances, extreme fatigue and a constant fear of knowing an AVM was still present definitely made a huge impact of her quality of life. It wasn’t long until she was back in hospital having formed a plum sized cyst on the AVM area, a rare reaction to the radiosurgery. This involved an insertion of a catheter that drained the cyst into the shunt, which then blocked from a small haemorrhage during the operation. After recovering from that episode, she was then able to go back to Salisbury but after two months, got severe abdominal pains and nausea which from another MRI and CT scan showed another blocked shunt so into theatre again. Once home to recover, her body then rejected the shunt forcing it to migrate which lead to another operation to reposition it. Another shunt revision was later experienced followed by a follow up MRI and the devastating news of two more cysts around the AVM area. This meant that two new catheters had to go in during a very long and complicated operation where a shunt revision was again needed and opening up of scar tissue. The long and invasive operation was followed by a stroke and loss of feeling down Amy’s left side, in her arm and leg. Another six invasive operations were needed in the next three months with an E. coli based infection that had managed to ride up the shunt catheter into her brain. Whilst trying to clear the infection by stripping out all tubes inside, Amy had another bleed in the brain causing her to be in the high dependency ward for ten weeks. It was here Amy began to suffer from depression with growing concerns about her physical deterioration. The Doctors asked for Teasel, her black Labrador, to pay her a visit much to everyone’s surprise. It was this moment of having Teasel lie next to Amy on her hospital bed for a whole day in silence that Amy smiled for the first time in weeks giving us all a bit of hope.

It has been heart breaking to watch my sister go through something no one should however it has been incredible to see her come through all of this and her stubbornness and strong character has meant that after four months since her last operation, she was already dancing the night away at a hunt ball…However trying to get back to a normal life is much harder than she hoped by suffering from daily migraines, fatigue, shunt pain, anxiety, visual disturbances, post traumatic stress and trying to get used to being half blind in both eyes. She is now waiting for an Angiogram and another MRI to see whether the AVM has been sealed. Amy will then take the huge decision on whether to undergo a big operation to remove the AVM completely.

Not only has Amy physically endured utter exhaustion and pain, the rarity of her case has meant that there has been a lack of emotional support and unanswered questions which leaves her in a position of uncertainty and fear which no 23 year old should be in. There is a desperate need for funding towards the research into brain AVMs and the treatment for them. The butterfly charity has been set up to raise awareness of this problem and to help with the research in finding a cure and a far more quick and successful treatment method so that patients like Amy will hopefully not have to endure the experiences she has been through. PLEASE HELP, as almost certainly today another person will be having to go through the torment of the healing process and worse still the majority who suffer bleeds in the brain from an AVM will never make it.