Saturday February 25th I shall be Dancing right outside the Awesome Druids Head Bar, Kingston-Upon-Thames, 11am - 6pm! Come say hi :) 

http://www.druidshead-kingston.co.uk/

In August 2016 I began my job as a live-in nanny and carer. One of the children whom I assist in taking care of is Jakey. He is such a loving, playful and despite everything, a seemingly happy child who loves music, playing with water and smelling great smells! 

He is now a 7 and a half years old, and he became ill and was diagnosed with the lifelong and little-known disease called Autoimmune Encephalitis when he was 3 and a half. A once 'normal', healthy child who was fluent in 2 languages and could play a little bit of piano, he now has difficulty utilising his speech, eating, recognising objects or understanding his world around him.

Encephalitis is an inflammation of the brain. It is a disease in which in response to an infection, your immune system attacks the brain. It is still a very new concept and there still exists professionals in the medical field who deny Jakeys condition even now.

What began as a high temperature and an ear infection, rapidly spiralled out of control until Jakey lost his memory, his motor skills, the entirety of his speech, his personality. This took 2 weeks. He was "like in a coma with his eyes open". 

Thankfully the family found help through a Swedish doctor, and they travelled there for Jakey to have Intravenous Immuno Globulines treatment. He now has this once a month in the UK and it keeps him stable. He has steadily improved and has since regained some memory, speech, recognition of his surroundings and he is able to run around and play again!

This treatment is expensive, but crucial to living with Autoimmune Encephalitis, yet the timeframe for its availability on the NHS is unknown. For Jacob, there have been several attempts to remove the treatment due to the cost, and other children may not receive it in the future. 

Living with Jakey and working with him and his team of carers, I see first hand every day that a life with a severely disabled child encompasses so much more than just managing their medication, (quite a task in itself!). It's the full-time, all the time care for their every need, from eating to dressing. It's the searching for new methods to educate your child of their world in a language that they would be able to understand, being creative in explaining things that 'average' people would find obvious, such as why chewing wires is bad and you should not do it! It's the managing of the carers, dealing with the unpredicatble results of the brain damage, trying to manoeuvre within any system with a disease which even the doctors you consulting with are still learning about, and all the while trying to still help your child live a happy and as close to a 'normal' childhood as possible. And in the case of Encephalitis - which is a disease which develops, you are not born with it - finding a way to cope with the unexplained loss of the child you once knew and to move forward for the child they are now.

The Encephalitis Society helps these families accomplish all of the above and more, whilst funding research into the uncharted illness. 

Their aim is one I feel a great connection with:

OUR VISION- The Encephalitis society:
To live in a world where Encephalitis is as rare as it possibly can be given its eradication is unlikely, and that those affected and their families, have access to early diagnosis, excellent management of their condition, timely access to rehabilitation and other forms of social support.

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