Essex

Essex teen's £300k bid for rare disorder operation in US

Maddi Thurgood
Image caption Maddi Thurgood is the only person in the UK with spastic paraplegia type 15

A teenager, who is the only person in the UK with a rare genetic disorder, is hoping to raise more than £300,000 for an operation and to help find a cure.

Maddi Thurgood, 18, from Essex, was diagnosed with spastic paraplegia type 15 (SPG15) three years ago after developing problems with her mobility.

Currently there is no cure for it.

As she does not meet the requirements for NHS treatment Miss Thurgood is hoping to travel to the US for an operation to relieve her symptoms.

SPG15 is caused by a genetic mutation and symptoms include learning difficulties, involuntary movements and dementia as well as muscle movement and pain.

Miss Thurgood, who is studying photography at Cambridge Regional College, said she was nervous about being operated on but that it would be worth it.

Image copyright Thurgood family
Image caption Maddi hopes the US operation will help her walk unaided

She said: "Hopefully it will mean I won't need to use my walking stick anymore. I will be free from what I have got."

Miss Thurgood said she had felt "special" as the only person in the UK with the disorder but it meant she cannot get any support from others with her disease.

Her mother, Carina Thurgood, said she was disappointed the NHS had not been "more on board" with them and their attempts to raise funding for research into the genetic disorder.

Image copyright Thurgood family
Image caption Maddi Thurgood is fundraising for an operation in the US

She said: "You just don't stop, the passion of a parent.

"I would just love the day when they turn round and say we have found the cure and then I will feel that my job is done."

Great Ormond Street Hospital for Children NHS Foundation Trust said NHS England has commissioned treatment for children with cerebral palsy who meet eligibility criteria.

The hospital said: "Those who don't meet those NHS criteria, but wish to explore avenues to receive SDR privately, can discuss the treatment with their clinical team."

Image caption Maddi Thurgood's mum Carina is campaigning to find a cure for SPG15

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