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

Maddi Thurgood. Picture: CELIA BARTLETT

Maddi Thurgood. Picture: CELIA BARTLETT

Archant commissioned. Copyright © 2017 Celia Bartlett Photography. All rights reserved

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.

Dame Bradbury's Charity Fundraiser for the Maddi FoundationDame Bradbury's Charity Fundraiser for the Maddi Foundation

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.

Dame Bradbury's Charity Fundraiser for the Maddi FoundationDame Bradbury's Charity Fundraiser for the Maddi Foundation

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.

Maddi Thurgood. Picture: CELIA BARTLETTMaddi Thurgood. Picture: CELIA BARTLETT

Full story on Maddi, see: See: www.themaddifoundation.com.

0 comments

Welcome , please leave your message below.

Optional - JPG files only
Optional - MP3 files only
Optional - 3GP, AVI, MOV, MPG or WMV files
Comments

Please log in to leave a comment and share your views with other Dunmow Broadcast visitors.

We enable people to post comments with the aim of encouraging open debate.

Only people who register and sign up to our terms and conditions can post comments. These terms and conditions explain our house rules and legal guidelines.

Comments are not edited by Dunmow Broadcast staff prior to publication but may be automatically filtered.

If you have a complaint about a comment please contact us by clicking on the Report This Comment button next to the comment.

Not a member yet?

Register to create your own unique Dunmow Broadcast account for free.

Signing up is free, quick and easy and offers you the chance to add comments, personalise the site with local information picked just for you, and more.

Sign up now

More news stories

Most of us can only dream of owning a car worth over a quarter of a million pounds.

The Helena Romanes School and Sxith Form Centre in Dunmow will host an evening of spiritual mediumship on September 28.

Prayers for sunshine and cloudless skies were answered as thousands poured into Dunmow for the carnival on Saturday.

More than 130 houses could be built in Great Canfield under plans submitted to Uttlesford District Council (UDC).

Digital Edition

Image
Read the Dunmow Broadcast e-edition E-edition

Most read stories

Newsletter Sign Up

Dunmow Broadcast weekly newsletter
Sign up to receive our regular email newsletter

Our Privacy Policy