A few years ago my friends lost their little girl to Battens. Emma was a bright, energetic toddler walking, talking, running and jumping around when they discovered that she had this disease. Slowly she went downhill, developing epilepsy, loosing her sight, not being able to walk or talk and finally after two years in a childrens hospital being fed through a tube, not being able to see or talk, walk or move, she died. She was just over 10 years old.
My friends would visit Emma every day spending hours in the hospital, their second home, still trying to give their other little girl a 'normal' life.
I wish I had done more for them then, but on the surface they tried to act strong, they coped, they went without without other people noticing and they never once complained.
Now I hope to raise money to help the families of the 200 affected children and young adults in the UK.
The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten Disease. They are based in Hampshire but work with children, young people, families and professionals across the UK.
They were in formed in 1998 with the help of SeeAbility and Contact-a-Family, by a small group of parents of children with Batten Disease . They were granted Registered Charity status in 2001 and the work of the charity has continued to go from strength to strength.
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