Sarah’s story

The 26 Miles photography fundraising project is drawing to its conclusion – a conclusion when poor old Cristian will have to run 26 miles!

There are people that we’ve photographed and interviewed who have not yet featured in this blog. One of them is legendary MND warrior Sarah Ezekiel. She’s perhaps the most inspirational person I’ve ever met – and that’s saying something because literally everyone we’ve met on the 26 Miles 4 MND journey has been inspiring in their positivity.

One of the reasons I haven’t blogged about our photo shoot at Sarah’s is that I wanted to avoid defining her by her illness. She was diagnosed with motor neurone disease in 2000 at the age of 34 but Sarah is so much more than the MND that has ravaged her body and left her paralysed and unable to speak.

She studied art and art history and at first thought that developing MND meant she would never paint again but Tobii eyegaze technology has changed that and she now paints with her eyes. Her pictures have been exhibited all over the UK and as far afield as Qatar.

Click here to see her amazing art.

This is a photo of Sarah and I just before her 26 Miles 4 MND photo was taken last year –

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Sarah and I chat before the 26 Miles 4 MND photo is taken a whole year ago!

A few months ago Sarah invited me to exhibit some of the street photography I take from my mobility scooter at a London exhibition she was helping to organise for the neurological charity Movement for Hope. She has a fun sense of humour and at the private view people became very excited because of a rumour that Russell Brand was going to visit.

I was sitting next to Sarah chatting when all this fuss was going on. I won’t repeat what she said about Russell Brand by privately typing with her eyes on her “Eye Gaze” assistive screen. Let’s just say it was quite rude but very funny!

Here are some pictures from the evening and of that famous surprise guest.

Cristian and I are attempting to shoot the last of our 26 photos in the next few weeks.

I hope we make it because Cristian has been accepted to run in a very special marathon. More on that soon.

On each of the 26 days leading up to his marathon we’ll be publishing one of our 26 Miles 4 MND portraits. Click here and support us by donating to help us reach our target of £2,600 for the Motor Neurone Disease Association.

 

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