Hopes that surgery will help Essex teenager with rare form of motor neurone to walk unaided - family in appeal for funds
PUBLISHED: 10:36 29 May 2019 | UPDATED: 11:44 29 May 2019
A teenager living with a rare form of motor neurone, has received news that surgery might help her walk unaided
A teenager living with a wasting disease, a rare form of motor neurone, has received news that surgery might give her extra time before the illness puts her in a wheelchair.
The operation will not cure the condition but it can slow down the process that is making it increasingly difficult for her to walk.
Maddi Thurgood, who turned 18 in April, was diagnosed just after her 15th birthday.
The youngster, who lives near Finchingfield, was previously a pupil at both Helena Romanes and Saffron Walden County High. She has been living with a life limiting disease called Hereditary Spastic Paraplegia Type 15.
She said: "It seems to be getting worse. My legs are very stiff and the spasticity makes it harder to lift my legs off the floor, this causes me to trip."
So far, there is no cure for the disease, but funding raised for Maddi through friends, family and the community has enabled scientists at the University of Sheffield to start work on creating a specially tailored gene therapy for a potential treatment.
If there were to be a breakthrough on this, it could also help other patients around the world.
Meanwhile, in February, Maddi's family were told that she would be a good candidate for a procedure called selective dorsal rhizotomy at St Louis's Children's Hospital in the USA. Maddi travelled to America to see the surgeon.
If successful, the surgery will enable Maddi to keep walking and give her some quality of life while she waits for a cure. The girl who was once a keen ice-skater now has trouble with her balance and uses a wheelchair when she is too exhausted to walk.
Maddi is enrolled on a photography course at Cambridge Regional College and attends on the days that she is well enough, but the debilitating disease is demoralising for her. She is constantly afraid that she will fall over.
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Dr T S Park, a world leading surgeon from St Louis's Children's Hospital in America, has already performed this operation on 22 patients who have the same rare disease as Maddi and with positive results.
Maddi's mum, Carina said: "He predicts that Maddi will be able to walk independently without the use of walking aids that she uses now. He has said the spasticity will be permanently reduced and her balance and level of comfort will improve.
"This will mean that doing everyday things that we all take for granted will be easier for Maddi and will be pain free.
"At last this gives us hope. Maddi finds living with this disease so difficult to deal with emotionally. It prevents her being independent as she is not able to go out without help. She needs to hold onto her mum or link arms with a friend, otherwise she will fall as her balance is now so severely affected."
Carina added: "We were told that Dr Park could not operate on Maddi for another year - unless there is a cancellation. Every day, I wake up and because of the time difference with America, I think maybe there has been an email from America overnight."
The surgery is not available to Maddi on the NHS or at Great Ormond Street Hospital. It will cost £85,000 which would include the surgical procedure, intensive rehabilitation and physiotherapy for up to two years after the operation.
Maddi is currently doing exercises to work on building up her strength to prepare for the surgery and give her the best outcome.
So far, over half the cost, £45,000, has been raised by the family and the Bradley Lowery Foundation (a fund set up in memory of a little boy who died of cancer in 2017).
Maddi and her family are in a race against time to try to raise the extra £40,000. Anyone who would like more information or could possibly help with fundraising can go to www.facebook.com/saveourmaddiappeal.