On Saturday 28th February, my incredibly brave sister Shannon had emergency brain surgery due to a congenital condition known as ‘Chiari Malformation.’ 🧠

This was a condition that was unknown to Shannon, and it was due to the incredible staff in the NHS that picked this up so quickly. ♥️♥️♥️

This is a condition where brain tissue extends into your spinal canal. This occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Due to this, it creates crowding of the brain stem, and in the majority of cases, blockages of CSF fluid. When the cerebellum is pushed into your upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid that protects your brain and spinal cord.

This can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. 

Shannon had Hydrocephalus. An accumulation of excess fluid within her brain (hydrocephalus) that required placement of a flexible tube (shunt) which now diverts and drains the cerebrospinal fluid to another area of her body.

I was astounded to learn there is very little awareness around this condition, and very little support in terms of essential, ongoing research with very small charities such as SHINE and the Ann Conroy Trust. 

On August 7th, myself and my brother Sean are going to Sky Dive from 10,000 feet for our very special sister, to raise as much money and awareness to as many people as possible.  ♥️♥️ This, will be the first of many fundraising opportunities. 

I would really appreciate if you could donate to our page, it would mean so much to us as a family. 💕

If you want to find out more, please visit the following website.

https://www.shinecharity.org.uk/related-conditons/chiari-ii

Shine provides specialist support from before birth and throughout the life of anyone living with spina bifida and/or hydrocephalus, as well as to parents, families, carers and professional care staff. Shine enables people to get the best out of life.Everything we do is made possible by our generous supporters. Your fundraising efforts help individuals and families in your local communities across England, Wales and Northern Ireland. Every donation has the potential for profound impact.THANK YOU for supporting Shine!