PUBLISHED: 08:45 06 April 2017

Angela Singer

Maddi Thurgood pictured on the farm at Saffron Walden County High

Archant

Scientists are now being recruited for research posts to work on a gene therapy strategy for Maddi Thurgood, the teenager whose rare, so far incurable, wasting condition they hope to treat. If it works, it will be a world first.

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Having travelled to America and Canada to see top specialists, help is now being offered by Sheffield University of Neurosciences (SITRAN) but it will cost 224,000.

With the community rallying in both Saffron Walden and Dunmow, over half that sum has been raised. Maddie is a pupil at the Joyce Frankland Academy in Newport and was previously at Helena Romanes in Dunmow.

After this latest medical trial was reported in The Saffron Walden Reporter and The Dunmow Broadcast, with a picture of Maddie receiving 700 presented by The Ohio Country Music Club in Newport, another benefactor has given 10,000.

Melissa Jones, captain of Saffron Walden Golf Club, is a trustee of The Donald Forrester Trust, set up by her late uncle.

She said: I was aware of the campaign and the collection jars in the shops round the town and when I saw the picture of the donation, I thought our trust was set up for this purpose.

Maddi was diagnosed in April 2016, just after her 15th birthday, with spastic paraplegia gene 15. Its a motor neurone so rare, no one else is known to have it in the UK and fewer than 20 people worldwide. However the Sheffield research project, to develop a gene therapy just for Maddi, could also help a three-year-old girl called Robbie in Boston, America.

Maddis mum, Carina spends her days researching across the globe in a race against time for something to stop her daughter deteriorating.

The youngster, once a keen ice-skater and still an enthusiastic pupil on the animal welfare course at Saffron Walden County High, now walks with a stick. She goes to school on her good days and is always seen with a smile.

Carina, said: We are in touch with Robbies parents constantly. We didnt choose to be in this situation but we are trying to do the best for our children.

The condition eventually affects all four limbs, the brain, vision and hearing. A website: saveourmaddi.co.uk has been set up to appeal for fundraisers. To help Maddi, email: info@saveourmaddi.co.uk or see: http://www.facebook.com/SaveOurMaddiAppeal or http://www.treeofhope.org.uk/maddis-story-save-our-maddi

Continued here:
Gene research for Essex teenager with rare wasting disease could be a world first - Dunmow Broadcast

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