Blainie was born on 29th October 2008 a very healthy baby girl. Blainie went on to reach all milestones on the way to nursery. She was always a happy little girl, sometimes shy when around people she didn't know.
At the age of 4 her family started to notice her becoming rather clumsy. Often falling over, banging into things and starting to lose control of her bladder. Before long this became more frequent with blackouts beginning to occur. Over the course of a few very short years Blainies condition deteriorated rapidly. Blainie suffered with regular blackouts, seizures and fits. Blainie dealt with learning difficulties in a main stream school. Loss of speech, mobility and sight had also started to slowly take over. With trips to doctors and hospitals up and down the country it took until January 2017 to be diagnosed with Battens Disease, CLN 6 variation.
Blainie, now 9years old is wheelchair dependant when outside of the house. Blainie has very little movement when out of her chair which in due course will cease completely. Blainie's childhood has been taken away from her at what feels like the blink of an eye.
Battens Disease is a very rare genetic life-limiting neurodegenerative terminal illness which currently does not have a cure. Only 8 people have been diagnosed with this type of Battens in the UK. With the prognosis that Blainie's life is currently limited to her teenage years. For us it is all about raising awareness and giving Blainie the best possible future we physically can.