Brain disease sufferer may yet star in TV ad

By Keren David, August 6, 2009
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Sarah Ezekiel with her friend Shireen Cohen: the two went to JFS together

Sarah Ezekiel with her friend Shireen Cohen: the two went to JFS together

A controversial advertisement which centres on the plight of a Jewish woman suffering from motor neurone disease may be approved to be shown on television, overturning a ban imposed because the advert was considered too shocking to be shown.

Broadcasting watchdog body Clearcast has asked for changes in the advert before it can be shown on TV. Now the Motor Neurone Disease Association, which made the film, is considering whether changes can be made without losing too much impact.

The advert, which has been shown in cinemas, and given a 15 certificate, shows a smartly-dressed woman knocked off her feet by an invisible force, stripped to her underwear and left twisted and vulnerable in a wheelchair. It takes its name, “Sarah’s Story”, from a Jewish woman, Sarah Ezekiel, 43, a mother-of-two who lives in Hendon, north London. Sarah’s body was used in the film, with an actress’s head superimposed on it.

“We knew Sarah was very active in raising awareness of the disease, so we asked her to become involved in the campaign,” said Louise Coxon of the MNDA. “We will have to think very carefully about whether the film can be changed as Clearcast has requested. The film is distressing, but it has been made to show how distressing MND is.”

Sarah Ezekiel was 34, a happy wife and mother of Aviva, three, and pregnant with her second child, when she noticed weakness in her left arm and that she was slurring her speech.

By the time she was seven months’ pregnant, she had been diagnosed with MND. “The diagnosis was so shocking that I convinced myself that my neurologist was wrong,” she said, but within a year after the birth of her son Eric, she had lost the use of her arms and her speech had deteriorated. Her marriage collapsed.

“I couldn’t physically care for my children or myself, and spiralled into deep depression. I’m now a single, disabled parent who is totally dependent 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 things did change for Sarah. She started going to a gym at a local hospice, and believes that has stopped the progression of the disease. She was given a laptop computer, adapted so she could use it with a chin switch. The computer enables her to talk, write and read books, and she has her own website — www.sarahezekiel.com

“MND made me feel very isolated but I no longer feel that way,” she says. Last month she attended a Buckingham Palace garden party, meeting many members of the royal family.

A former member of Od Yosef Hai Synagogue, she is “immensely grateful” for fundraising efforts by the Jewish community.

She was approached by the MND about the advert and told she would have to be filmed wearing only her underwear. “As I’ve had hundreds of carers helping me with personal care for eight years I wasn’t particularly fazed. ”

At first the film-makers planned for Sarah only to appear in one shot, but she insisted that they used her in other scenes to show the deterioration that MND causes to the body.

“The scene where I’m sitting and you can see my back was the funniest and most painful. I can’t sit up alone so I tried to hold on to something, which didn’t work. The shot was eventually managed by someone lying in front of me and pulling my arms forward. The concrete floor was cold and hard; so painful for my skinny behind. I heard ‘cut’ and was relieved... then they asked for one more take!

“I’m hoping that the film will be shown on TV so that the general public will find out about MND. I believe that more awareness will lead to an effective treatment or cure.”

    Last updated: 2:30pm, August 6 2009