Possible cure for Essex teenager’s motor neurone disease if family can fund it

PUBLISHED: 09:14 13 February 2017 | UPDATED: 09:14 13 February 2017

Maddi receives a donation of £700 from the Ohio Country Music Club in Newport.

Maddi receives a donation of £700 from the Ohio Country Music Club in Newport.

Archant

Maddi Thurgood is a teenager with a rare form of motor neurone disease. Scientists have said there could be a cure but her family needs to raise £112,000 to fund it.

There is new hope for Maddi Thurgood, the teenager whose life is threatened by an extremely rare form of motor neurone disease.

Scientists at the University of Sheffield, have said they will work on gene therapy for Maddi.

They are about to start work specially tailored to try to help the youngster, a former pupil at Helena Romanes School in Great Dunmow and currently a student at the Joyce Frankland Academy in Newport.

The Gene Therapy Research team at Sheffield Institute for Translational Neuroscience are world leaders in this research. However, as Maddi is the only one in the UK with this disease type, the family must pay for it.

Her mother Carina said: “It appears that there is no one else in the UK with this disease type and thought to be fewer than 20 people in the world. It causes paralysis in all four limbs, also brain abnormalities and affects sight and hearing.”

She added: “The disease is taking hold of our daughter and gradually disabling her legs as it progresses. We do not know the speed nor when and where it will end. We need to act quickly.”

The research will cost £224,000. So far, half of that has been raised by the family and the community in Saffron Walden and Dunmow. The latest donation was £700 from the Ohio County Music Club in Newport.

Now Maddi’s parents, Carina and Paul, are appealing for help to raise the other half – to try to save their daughter.

Maddi was diagnosed with the condition just days before her 15th birthday in April last year.

Carina said: “I research every single day, I am always opening pages. I look at other diseases to see does that connect to Maddi’s disease. I don’t ever take a day off. I wake up in the morning and that’s what I do and I won’t stop.”

The youngster who had enjoyed ice-skating and horse-riding and was a keen student at Saffron Walden County High’s farm school because she wanted to look after animals, now walks with a stick and has started to ask if she can have a wheelchair.

The disease is progressive. Unchecked, it will disable her altogether but the Sheffield team are hoping they can stop it going further.

Carina said: “We are trying to keep strong. Maddi has good days and bad days, sometimes it is too much. She goes to school two or three days a week. They look after her and when she gets tired, she can have a lie-down.

“We just have to keep focused and help her stay strong as long as possible. She has a personal trainer, she has sports massage for her nerves and muscles. She is going to try neurological pilates. This is all provided by volunteers, everyone wants to help. People have been wonderful. We cannot express how grateful we are to everyone.”

“The research can be started soon and the aim is if all goes to plan the timescale could be quicker.”

Carina explained that Maddi was born with a gene mutation causing the extremely rare SPC15 (Spastic Paraplegia Gene 15). “I’ve discovered this can emerge from the ages three to 19 and hers started when she was 13. We didn’t know it was sitting there waiting to come out. It was a bit of shock.

“But now we have a plan, now there is hope that there could he a cure. If this research can help Maddi, it will open the gate to help other people with similar gene problems and that would be great news if it goes on to help others. What everyone has done is helping towards the future.”

To help Maddi go to these links:

https://www.facebook.com/SaveOurMaddiAppeal/

http://www.treeofhope.org.uk/maddis-story-save-our-maddi/

2 comments

  • I very much hope that they will be able to collect all the money they need!

    Report this comment

    Explorer101

    Tuesday, February 14, 2017

  • As Pilates enthusiasts, we sure would love to be kept updated on her progress. Regarding, trying do you have a studio we can go to so we can contact them for information on their work and efforts? Thank you. Pilatespal

    Report this comment

    Pilates Pal

    Monday, February 13, 2017

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