Ball for brave Maddi raises thousands for research fund

PUBLISHED: 07:40 20 November 2019 | UPDATED: 10:00 20 November 2019

Maddi with her sister Alex

Maddi with her sister Alex

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A teenager barely able to walk has danced all night at a charity ball after life-saving surgery.

Maddi was able to dance at her ballMaddi was able to dance at her ball

A teenager barely able to walk has danced all night at a charity ball after life-saving surgery.

The ball, on Saturday, November 9, raised £16,000.

Maddi Thurgood, 18, returned home from having spinal surgery (selective dorsal rhizotomy) at St Louis's Children's Hospital in the USA in time for her latest fund-raiser - a glitzy gala at Down Hall Hotel and Spa in Hatfield Heath, to find a cure for her rare form of motor neurone disease.

Maddi is believed to be the only person in Britain with Hereditary Spastic Paraplegia Type 15. (SPG15). Since diagnosis in April 2016, just after her 15th birthday, her family has been seeking a cure.

Maddi (right) with Vicki Michelle and singer Andy WiltsherMaddi (right) with Vicki Michelle and singer Andy Wiltsher

Having paid £60,000 for the surgery and raised £300,000 to fund research at Sheffield University for a specially tailored gene therapy, they now need another £2 million to put a possible cure into practice.

If the gene therapy is successful, it will not only help Maddi, a former pupil at Saffron Walden County High and Helena Romanes School in Dunmow, it could help others around the world.

Now back on her feet, Maddi said: "It feels great. I danced to (music by) Robbie Williams and Michael Buble. Andy Wilsher (the singer at the ball) was really good. I am still going to physiotherapy but I think I might try getting back to ice-skating next year and start learning the piano."

She said going to America was ok - but going to hospital "Isn't like going to Disneyland - it's loads and loads of work. But when I first got out of that bed I was very happy, I had been in bed for three days (Before she was first lifted out to start physiotherapy). I have good days and bad days but I just keep going. I know I've just got to get on with it."

Maddi was able to dance at her ballMaddi was able to dance at her ball

For the ball, hosted by 'Allo 'Allo star, Vicki Michelle, Maddi wore a, gold chiffon dress given to her by retailers Prom n Party in Billericay.

Maddi's mum, Carina said: "The ball was a very special night."

Since her daughter was diagnosed, Carina has researched rare diseases to the point where she now attends international, medical conferences. Last week, she was gathering information from experts in Barcelona.

She told the Reporter: "We have waited two years for the scientists to come up with something and when they reach the the point that they think they have a cure, we will have a battle to take it forward to clinical trials and apply to be able to use it."

Maddi with her sister AlexMaddi with her sister Alex

To donate or help fundraise, see: www.facebook.com/saveourmaddiappeal.

Supporters of the ball's raffle and live auction included: Down Hall Hotel Down Hall Hotel & Spa, P&A Woods,Trisha Roberts, Chelsea FC Chelsea Football Club, Arsenal FC Arsenal, Linda Farrow London, Fredericks Flowers Fred William, The Vojan Ongar, Fitness Focus Thaxted, Marks and Spencer Epping, Round Table Saffron Walden, Toppesfield Vineyard, Jackie Portway, Hill Street Chocolateir, Jackie Dyer and Andy Wilsher, Jenny Read, Paige-elizabeth Reed, The Zetter Townhouse, Magician Nick Brown, Amelia Bullett and BubbleMoon Photography @hnemedia

Lovelight Entertainment.

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