doc

A teenager is in a race against time to raise cash to help scientists find a cure for her rare disorder.

Maddi Thurgood, 15, from Ongar, is thought to be the only person in the UK and one of just 20 worldwide suffering from SPG15 (Spastic Paraplegia Gene 15).

The condition, a type of motor neuron disease, causes paralysis of the limbs, affects vision and hearing and can also cause juvenile Parkinson’s. 

Maddi’s family have been contacted by the Gene Therapy Research team at the Sheffield Institute for Translational Neuroscience, one of the world leaders in this area of research.

The institute has offered to carry out research on the teenager’s genes in an effort to find a cure for her disorder. 

However, the process is expected to cost more than £224,000, a figure Maddi’s family must raise on their own if treatment is to go ahead.

Maddi’s mother Carina said: “We were contacted by the Sheffield Institute and they told us they were willing to give it a go, but we have to fund the research ourselves.

“They are ready to start, they have got to research her disability to see if there is a treatment that could work.

“It is unbelievable for us, their goal is to research her disease and if all goes well they will trial the treatment with Maddi.”

The family has already raised more than £100,000 in donations from local businesses and organisations, but is still short of the total.

Carina added: “We have already raised £100,000, we just need to find the other half to make sure it all goes to plan, we cannot be in a position where they begin treatment and we do not have the funding.

“The whole of our local community have really pulled together and they have done masses for Maddi.

“But it has got to the stage all where we have done all that we can and we now need to let others know about what we are doing.”

To find out more about Maddi, or to donate towards her treatment, visit: facebook.com/SaveOurMaddiAppeal.