I'm a single Mum with a beautiful,intelligent daughter. I'm extremely proud of her as she hasn't had the easiest of starts to her life. For years we haven't known what was wrong with her. She appeared to be a happy normal baby. I first noticed something was wrong when she was about two. No matter how hard she tried she couldn't keep up with the girls her age. She used to stumble and fall over so much. She has always been strong minded and tough, with plenty of smiles and laughter despite regular injuries from her frequent falls.

As the years progressed, so did Ruby,s problems. Her legs began to spasticate. Nothing stopped her from joining in with everything. playing football. She was fearless and good but couldn't stay on her feet. Riding bikes and her beloved scooter was the bain of my life! I was forever picking her off the ground, battered and bruised. Never any tears just anger and frustration We had so many fights on safety.

Then the battles began trying to get her to do exercises to keep her mobile. I tried all sorts of different therapies and strategies to keep her positive but by year6 it was clear things weren't getting any better. Both Ruby and myself always had hope. Neither of us wanted to admit she was disabled. I was heartbroken when a wheelchair was suggested
Going to secondary school, brought more challenges and frustration. Poor Ruby kept battling on. 2007 my Mum died. Ruby was close to her Grandma. My relationship with her Dad broke down completely. Ruby was still doing well at school. Her stoic, sociable nature has brought her through so much. she has made some good friends but has also had to endure bulling.
September 2015 Ruby finally discovered she has a rare condition. There is no cure, How unlucky, both myself and her Dad carry this gene. Ruby is likely to deteriorate, but it is uncertain when and how much.
Ruby is now 16. A specialised wheelchair will make a huge difference to her independence in life.