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Emilia TYSER avatar
Emilia TYSER

Tyser girl's Northumberland Coastal Marathon

Fundraising for The Butterfly AVM Charity Limited

86 %
£430.00
raised of £500 target
by 11 supporters
Donate
  • Event: Northumberland Coastal Marathon, 22 Feb 2020

The Butterfly AVM Charity Limited

We fund medical research & raise awareness to improve the lives of AVM sufferers

Charity Registration No. 1149170

Story

In February, Annabel and I are taking part in the Northumberland Coastal Marathon. Although I originally signed up purely ‘for fun’, I have decided it would be a wasted opportunity if I weren’t to raise money for a special charity. With this to motivate her, Annabel immediately signed up too. The charity we would like to try and raise some funds for is ‘The Butterfly AVM Charity limited’. 

It is often not until someone close to you experiences an illness, that you become fully aware of it. I admittedly had not heard of an ‘AVM’ until July 2014, when a dear family friend of ours, Amy Izat, had a Subarachnoid Haemorrhage from a right parietal/occipital Artero-Venous (AVM). Since then, along with numerous operations, she has suffered through daily migraines, fatigue, shunt pain, anxiety, visual disturbances and post-traumatic stress, as well as trying to get used to being half blind in both eyes. Not only has Amy physically endured utter exhaustion and pain, the rarity of her case has also 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 25-year-old should be in. Despite everything she has gone through and continues to go through, Amy has remained positive and as-ever her kind and loving self; never letting her illness define who she is. She is also a brilliant artist and continues to produce stunning drawings. 

The Butterfly charity has been set up to raise awareness of AVMs and to help with the research in finding a cure, in order to help reduce the exhausting and frightening journey of those undergoing treatment, and to make this treatment faster and more effective. Today, another person will almost certainly 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.

Amy has kindly let me share the details of her AVM journey so far below:

In July, 2014, Amy was living the dream in Sardinia, where she was working. Having previously always been healthy, 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. She was transferred to Sassari hospital, where she was put into a coma for three days. As I mentioned, she had had a Subarachnoid Haemorrhage from a right parietal/occipital Artero-Venous (AVM). Her parents, Jane and Zandy, flew out immediately and were told that she had a 50/50 chance of surviving. After two weeks in Sardinia, once her condition was stable and an emergency operation had taken place, she was flown in a low pressured plane to the RVI in Newcastle. There she spent four weeks in the High Dependency Unit and 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 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. 

This summer, Amy underwent another operation due to a reaction from the radio surgery. They had found that the previous treatment hadn’t actually de-activated the AVM blood vessels, causing another bleed during the operation and a further loss of vision. 

Amy continues to produce stunning art-work and lives life to the fullest but answers to her questions and some certainty, are clearly desired by her. 

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