Sophia’s Story

Hello Everyone,

Myself & good friend Chris Doona will be running the Chester Marathon later this year on the 2nd of October, this will be the first ever participation in a marathon and whilst we’re excited to compete in this were at the same time dreading it especially the training which is well under way!!

Why are we doing this?

As some of you may or may not be aware, my little sister Sophia, 8, has been diagnosed with a rare brain disease known as moyamoya. This disease affects only one person in every million in which it causes strokes, seizures, brain damage and paralysis. Late last year Sophia was taken to the doctors after suddenly feeling ill. We thought it would be nothing more than a mild illness that would go within a matter of days. Sophia was then omitted to Gloucestershire Hospital where she had various tests where it was discovered she’d been having multiple strokes over the last 6 months. She was then sent to Bristol Childrens Hospital where doctors gave us the sad news that she is suffering from this disease. This had been a real shock to me and my family as at the time we were fearing the worst.

Sophia has recently undergone two long excruciating 10-hour brain surgery’s in which the neurosurgeons make an incision to expose the healthy blood vessel, the superficial temporal artery it is then separated from the surrounding tissue, while blood continues to flow through. 

Unfortunately, as you can understand, brain surgery’s are incredibly risky and Sophia had lost a lot of blood and had to have an emergency blood transfusion. She also had to be put to sleep for 3 days after the second surgery. Following a tense few days she is slowly on the mend, however she is still unable to speak or eat. There is no exact time frame on when we can expect this to change. With Sophia also being autistic, it adds another challenge to our family going forward, but we are all so proud of her, she continues to make us smile & laugh every day. Sophia is currently able to walk with support, which is incredible considering the time frame. 

More details on the surgery can be found on the below link https://bwc.nhs.uk/news/firstever-complex-moyamoya-brain-surgery-at-our-childrens-hospital-4359/

The Charity

We will be raising money for the Brain & Spine Foundation they do a fantastic job providing patients & families with support. They are the only UK-wide charity providing information and support for every one of the over 470 neurological disorders which affect 1 in 6 people in the UK.

Their expert services are there for people at every stage, from first symptoms, diagnosis, treatments and in the long term.

Neurological conditions and associated treatments are often complex and poorly understood by those affected and their families. Many people wait for a long time for diagnosis while living with ongoing symptoms and the anxiety of not knowing what the future hold.

This disease has been immensely difficult for myself & my family to deal with over the last 8 months with the uncertainty and long wait on results and surgery and whilst there is no cure for the disease itself we do hope the surgerys will prevent any further future strokes.

https://www.brainandspine.org.uk/supporting-you/

It has personally been one of the worst experiences in my life with the constant worry over Sophias health & well-being, but I know she will get through this like the fighter she is!

Please donate whatever you can it will really make a huge difference; 

• £32 could fund a Helpline nurse to answer calls for one hour. The free, national Helpline is run by neuroscience-trained nurses who provide a trusted, expert and safe space where you can seek professional insight and emotional support.

•   £84 could provide a hospital with a box of expert information booklets. The Brain & Spine Foundation produce high-quality health information so you know what to expect when seeing your consultant or clinician. It also helps you, and your family, to understand the symptoms and diagnosis, and to participate in shared decision making about treatments.

•  £250 could fund a peer support group for a month. The Brain & Spine Foundation peer support programmes, Neuro Social, Neuro Creative and Neuro Carers, along with our community Facebook groups, offer a safe and welcoming space where you can discuss your reality, share advice, and offer mutual support.

Thank you for taking the time to read this & your generosity 😊

Adam & Chris