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Everything was pretty straightforward for me until the age of 34. I was happily married with a beautiful little girl and pregnant with my much longed for second child. I was healthy, fit and enjoying my pregnancy. I couldn't have asked for more.

In February 2000, I noticed some weakness in my left arm and my speech was slurring. By April 2000 I had a definite diagnosis of motor neurone disease. It happened that quickly and I was absolutely terrified. My world was shattered. My marriage collapsed as I became progressively disabled. I couldn't physically care for my children or myself anymore, and spiralled into deep depression. I'm now a divorced, disabled parent who is totally dependant on carers for everything. I never expected my life to change so tragically and it took me years to see anything positive about my situation.

BUT, I pulled myself up from rock bottom and if I could do it then I believe that anyone can. The first step was to start attending my local Marie Curie hospice in April 2001. I receive amazing care and really love going there.

I started writing my story next, using a program called E Z Keys with a chin switch. I'm now using the Tobii PCEye and started to paint with it in 2012. I regularly give presentations to health professionals because education is everything. I'm the London Jewish News Community Hero 2010 and The Third Sector Volunteer of the Year 2016. I'm also the Sarah in the MNDA's advert 'Sarah's Story'. I'm the Secretary of the NW London branch of the MNDA and on the Board of Movement for Hope.

Approximately 5,000 people have this devastating illness in the UK and 5 people die from it every day. My aim is to continue to raise awareness of MND until a cure is found.

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