Appeal to fund surgery in America for brave teen from Finchingfield to keep her walking - latest in Maddi’s fight against wasting illness

PUBLISHED: 11:52 11 February 2019 | UPDATED: 08:37 13 February 2019

Maddi Thurgood at a fund-raising ball in November organised for her by family friends

Maddi Thurgood at a fund-raising ball in November organised for her by family friends

Archant

Maddi Thurgood, the teenager whose family is in a race against time to fund research to beat her wasting disease, is now hoping to have surgery to help her to walk.

Maddi Thurgood, the teenager whose family is in a race against time to fund research to beat her wasting disease, is now hoping to have surgery to help her to walk.

She and her mum Carina are planning to fly to St Louis in America on February 23 to meet the surgeon for an assessment.

Maddi has a rare form of motor neurone disease. Part of her deteriorating condition is a spasticity (muscle stiffness) of the legs which prevents her being able to walk for long.

Now Maddi’s family is hoping she can fly to the United States for a procedure called selective dorsal rhizotomy where the nerves are severed to stop the muscles contracting.

The procedure involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord.

The surgery is available in this country at Great Ormond Street Hospital for Children but Maddi has been turned down for it there because doctors here say she is too weak for the operation.

Maddi’s family has already raised some £250,000 for research into a specially tailored gene therapy for her at Sheffield University of Neurosciences.

This work is on-going but will take some years to complete. Though if successful, it could benefit other children around the world. This is being supported by the charity that was set up for Maddi, www.themaddifoundation.com.

So far, mum Carina, who spends every waking hour researching her daughter’s condition, has not found anyone else suffering from it in Britain.

Now the family is also fund-raising to pay for this operation. It will cost around £80,000 for the surgery and the daily physiotherapy that must follow it - for up to two years.

Carina said of the funding for the surgery: “We are half-way there.”

Describing the operation, she said: “Once the spasticity has gone, she will be left very weak and we will need to build her up. She is constantly doing exercises, trying to fight this disease, trying to make her muscles work.”

Maddi who lives in Toppesfield, near Finchingfield, is a former pupil at Helena Romanes School in Dunmow and Saffron Walden County High.

She is now studying photography and media at Cambridge Regional College.

The 17-year-old was diagnosed with a rare illness, which turned out to be a form of motor neurone disease, just after her 15th birthday in April 2016.

Once a keen ice-skater, she can now barely walk and uses a wheelchair.

Carina said: “The college has tailor-made a course for her, she goes in Monday afternoon, Tuesday all day and Wednesday afternoon.

“It’s something in her life and when she’s been there, she is always very happy. The full day exhausts her but there is a room where she can go and have a sleep.

“She is always smiling but she does suffer from anxiety. There are bad days. I have a knot in my stomach most of the time.

“Every single day when I open my eyes, it’s like being in a nightmare that you can’t believe is real and you can’t get out of.”

Maddi’s illness came out of the blue, Carina says. “As a little child, I never took her to the doctor’s. Maddi was never unwell. She never even got colds.”

The family is hoping that Maddi’s surgery will be carried out next year at St Louis Children’s Hospital by Dr T S Park, regarded as one of the world’s top surgeons for the procedure.

Carina has spoken to some of his other patients, including UK adults with cerebral palsy, who have been helped to walk.

The four-hour surgery will not halt or cure Maddi’s underlying condition. She has a progressive, wasting disease, but if successful, it will free up her leg muscles.

Carina said: “It’s one thing having a child ill and it’s another thing having to fight the system and raise money for treatment. If only we could go to a hospital in the UK for the surgery that would be so much easier.”

Carina has had to seek out all Maddi’s treatment so far.

“We have had to go and raise funds for research. I have connected with a lot of scientists and doctors from all over the world, it’s great but I had to go and do things or nothing would have happened. If this surgery works, it will buy time.”

To help Maddi receive this surgery you can donate on Facebook page “Save Our Maddi Appeal” which is supported by The Bradley Lowery Foundation.

To follow the Gene Therapy research see: www.themaddifoundation.com.

Most Read

Most Read

Latest from the Dunmow Broadcast