Sarah is very grateful for the support she’s received from the MND Association, Challenging MND and other charities. Bringing up two children alone was tough and Sarah is grateful to have survived for such a long time and see her children grow up.
Everything was pretty straightforward for Sarah until the age of 34. Happily married with a beautiful girl Aviva, and pregnant with her son Eric, she was healthy, fit and enjoying her pregnancy. She couldn’t have asked for more.
In February 2000 she noticed some weakness in her left arm along with slurred speech. Sarah was diagnosed with motor neurone disease in April 2000. She only told close family and friends, being in total denial thinking that her symptoms would disappear after she gave birth. However, after Eric was born her symptoms progressed rapidly and she went from using a stick to a walking frame to a wheelchair. Sarah soon had to stop driving when she couldn’t turn the key in the ignition and her arms became too weak to steer. That was a terrible loss of independence and her world was shattered.
Sarah’s marriage collapsed as she became progressively disabled. She couldn’t care for her children or herself and spiralled into deep depression. Sarah’s now a divorced, disabled parent who is totally dependent on carers for everything. She never expected her life to change so tragically and it took years to see anything positive about her situation.
Sarah pulled herself up from rock bottom and believes there is always hope in every situation. The first step was attending her local Marie Curie hospice in April 2001. She received treatment for depression and had counselling, started exercising in their gym and tried alternative therapies. Life started to drastically improve.
She started writing her memoir in 2005 using E Z Keys software with a chin switch. Sarah’s now using Tobii Dynavox eyegaze software, started to paint with it in 2012, and is now a world-renowned eyegaze artist. Sarah has exhibited in several countries and is now experimenting with AI art. She actively supports adults and children who want to create using assistive technology.
She is the London Jewish News Community Hero 2010, The Third Sector Volunteer of the Year 2016 and a patron of Lifelites. Sarah is in the MND Association’s first broadcast advert ‘Sarah’s Story’ and Co-Chair of the NW London MND branch. She loves supporting people in a similar situation to her and has campaigned to give people living with MND the support they need.
She’s now directing a show about her life with Drag Queens Cheddar Gorgeous, Pixie Polite, Te Te Bang and Duane Nasis. This is the first time awareness of MND has been raised through Drag.
Sarah is very grateful for the support she’s received from the MND Association, Challenging MND and other charities. Bringing up two children alone was tough and Sarah is grateful to have survived for such a long time and see her children grow up. She is very proud of her children who had a difficult childhood but have grown up to be wonderful adults.
Approximately 5,000 people have this devastating illness in the UK and 5 people die from it every day. Sarah’s aim is to continue to raise awareness of MND until a cure is found.