Essex teenager Maddi after surgery in America to help her walk asks: "Will I be able to dance?"
PUBLISHED: 16:45 09 October 2019
Maddi is recovering after a four-hour operation at St Louis Children's Hospital in the States.
Her mother, Carina said: "Every hour, (during the operation) we got a phone call to update us on what stage the surgery had reached, it was amazing.
Maddi Thurgood, a teenager with a rare form of motor neurone disease, has had surgery in America to help her walk and is asking physiotherapists: "Will I be able to dance at my ball?"
Maddi's family and friends are putting on another fundraising event next month for research - to help Maddi and other sufferers of this life-destroying condition.
Maddi is currently recovering after a four-hour operation at St Louis Children's Hospital in the States.
Her mother, Carina said: "Every hour, (during the operation) we got a phone call to update us on what stage the surgery had reached, it was amazing."
Maddi has had selective dorsal rhizotomy, a procedure to reduce spasticity (tight and stiff muscle tone) in the lower limbs.
She is now working to strengthen her spine and build up the muscles in her legs and is starting to walk again.
Carina said: "As usual, Maddi is trying to be as upbeat as possible. She is really delighted to be back on her feet and she is trying to walk every day.
"She's really pleased that she has had this done. She is such a strong girl, how she deals with it. She doesn't complain, she works really hard. We're really lucky, she never complains, she's been such a trooper.
"You could see in her face that she was in pain. It broke your heart but she said: 'I can't believe I can sit up'.
"When she got out of the wheelchair and took steps, she was so pleased with herself: she said: 'I've managed to walk today' and 'Look, I can move!'.
"Maddi is always smiling. She wants to be able to dance at the ball. I don't know if she will, but she will give it a try."
The operation, not available to Maddi on the NHS in the UK, was carried out by a world-leading surgeon Dr T S Park.
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The family first went to see Dr Park in February.
Carina said: "He said she would benefit from the surgery and she was booked in for next year but there was a cancellation so he was able to bring it forward."
Maddi, from Toppesfield, near Finchingfield, is a former pupil at Helena Romanes and Saffron Walden County High School.
She is currently enrolled on a photography course at Cambridge Regional College but her attendance has been limited by her illness. The disease meant the once keen ice-skater was barely able to walk and has little energy.
Maddi had the surgery on September 27. She will have intensive physiotherapy at the hospital until October 25.
The cost of the surgery and physio for rehabilitation is £85,000. Part of the money has been raised by Maddi's family and the Bradley Lowery Foundation, a fund set up in memory of a little boy who died of cancer in 2017.
Maddi, who turned 18 in April, has been living for the past three years with the wasting disease, hereditary spastic paraplegia 15.
Ever since her daughter was diagnosed, just after her 15th birthday, Carina, once a mum like any other, blissfully unaware of medical conditions and procedures, has spent every waking hour researching the condition to find out if - against the odds - there can be a cure.
Her ceaseless search has been a race against time because the disease has a remorseless progression.
She said: "(At the beginning) I had no knowledge whatsover. The day before we left for America, I was asked to make a presentation at a Rare Disease Symposium at the Wellcome Trust in Cambridge and the day before that I was meeting French scientists in Nice and I was learning from them."
The Maddi Foundation, set up by the Thurgood family, has funded research at the University of Sheffield, to create a specially tailored gene-therapy for a potential treatment. The work has been going on for two years. A breakthrough could help other patients around the world. This is a long process and would involve clinical trials.
The Autumn Ball is at Down Hall Hotel and Spa in Hatfield Heath on Saturday, November 9. It will have Allo Allo and I'm a Celebrity star Vicki Michelle hosting as well as a raffle, live music and auctions. Last year's event (also with Vicki Michelle at the same venue) raised £27,000. Tickets are £89 per person, including sparkling drinks and a three-course meal. The auction prizes include holidays and a meal to be cooked at your home by a winner of Masterchef.
Tickets from Alexandra@themaddifoundation.com.
Anyone who would like more information or could possibly help with fundraising can go to www.facebook.com/saveourmaddiappeal.