Sheffield University's pioneering gene therapy for Essex teenager with motor neurone will cost in the region of £2million
PUBLISHED: 14:08 18 June 2018 | UPDATED: 14:26 18 June 2018
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The parents of Maddi Thurgood, from Toppesfield, near Finchingfield, a pupil at Saffron Walden County High School, are about to receive a report from scientists at Sheffield University of Neurosciences after the first year of their research to find a specially tailored gene therapy for the rare disease.
Maddi’s mum, Carina said: “The researchers are getting nearer to knowing how they are going to do this, what method they will use and the obstacles they face. There will be another year of research but producing a treatment and conducting clinical trials will take longer and will cost around £2million. Meanwhile, all we can do is wait. We have to keep going, keep pushing and keep hoping.”
The family have raised £244,000 to pay for the initial research and are about to apply for grants for the next stage.
If a treatment for Maddi can be found, though she is thought to be the only person in Britain suffering from this condition called SP15, there are other children with SPG15 and related conditions around the world who could be helped.
Maddi, 17, was first diagnosed with a degenerative illness in April 2016.
Once a keep ice-skater and horse-rider, she now struggles to walk and though still at school, on Saffron Walden County High’s animal care course, she can only manage to go to school every other day because she gets so tired.
Last Wednesday, June 6, teachers at Dame Bradbury held a fancy-dress football match and the day’s organiser, Sara Gustafsson, was the teacher the children voted for to wade through the school pond.
Miss Gustafsson said: “The teachers had just played football in animal onesies on a hot day so going through the water was quite nice. It was lush with plant life and the children asked if I had trodden on newts.”
The youngsters’ school council thought up the fundraising ideas for Maddie including the football game, a DNA-themed treasure hunt, a dizzy football shoot-out where they had to spin round before scoring goals, creating junk creatures and paying to vote to dip a teacher in their pond.
Full story on Maddi, see: See: www.themaddifoundation.com.