Our Forth coming Cars and Coffee event being held on the 12th March 2016 is being run in assosiation with this great charity. One that is close to our hearts here at Williams Crawford. We would love all event goers to help us show support by purchasing a coffee or two and if you would like to making a donation.
Katie’s Story Our chosen charity this year is the Batten Disease Family Association, which aims to support families of Battens Children, and to facilitate research into this most cruel of conditions.
Batten Disease is a very rare, inherited neurological disorder. It is currently incurable, although gene and enzyme therapy appears to hold the key to a cure. Battens Disease is so rare that there is very little funding for research into the disease or for family support. The BDFA provides a hub in the UK for both of these activities, and has recently managed to fund a PhD student to work in the research field. It is also engaged in raising the profile of the disease, with a view to obtaining further research funding, and to this end, is working towards bringing together all Battens charities globally so that research efforts can be coordinated worldwide.
The reason that this is such an important Charity that we raise money for is our friends Karen and Martin who lost their beautiful little girl Katie four years ago to this awful disease. She was only six. At the age of 3, Katie was a happy, outgoing little girl, intelligent, sporty, and with a lust for life.
The first sign that anything might be wrong was when she had her first epileptic seizure. As time progressed, the brain damage caused by her condition led to further seizures, and to her losing all the skills she had learnt. With characteristic bravery, she struggled on, trying to retain the ability to do all the things that a normal 3-year-old can do.
However, she was fighting a losing battle. By the age of 5 she could no longer walk or talk, and was going blind. Her seizures increased in number, and she was wracked by agonising muscle spasms. This horrific condition continued to steal her away until she finally passed away in her mum and dad’s arms on 28 July 2009.
If you have time please take a look at the website www.noahshope.com
Please help us by purchasing a coffee or two and if you would like to making a donation so as we can raise as much as possible to this important cause, every penny counts. Thank you.
Please Visit the Charity Website to Find out more about this important cause – http://www.bdfa-uk.org.uk/