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 Dynavox 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, The Third Sector Volunteer of the Year 2016 and a patron of Lifelites. I'm also the Sarah in the MNDA's advert 'Sarah's Story' and Co-Chair of the NW London MND  branch.

 

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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