Page 3 Girl Michelle Marsh reveals desperate battle to save her daughter’s life from rare disease
PAGE 3 Girl Michelle Marsh is battling to save her daughter from a rare disease which leaves her in constant agony.
Michelle says Maddison, 14, has complex regional pain syndrome (CRPS), a chronic nerve disease with no known cure.
Sufferers compare the pain to breaking bones or giving birth.
Keen dancer and skateboarder Maddison said she felt like right leg “was on fire” from March 2021.
Mum-of-three Michelle, 39 — a Sun favourite in the 2000s and wed to ex-footballer Will Haining, said: “At first we kind of brushed it off, but as the week went on Maddison started to limp going to school.
"On the Friday she phoned me crying, saying, ‘I’m in agony’. She couldn’t walk. She was scared.”
Weeks of tests found no answer and Maddison could not sleep.
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Michelle, of Oldham, added: “She’d scream through the night in pain.
“She was asking to have a leg amputated, something she still says today. But there’s no guarantee it will stop the pain because it’s the brain signals and nerves that are causing the problems.”
In January Maddison’s right leg went numb and is now paralysed. Her left leg has tremors.
Bizarrely less pain meant she could put her leg in the bath for the first time in nine months.
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But the condition has also spread to her organs. She has lost a stone and a half and struggles to eat. Her hand is also affected.
Doctors have also diagnosed Functional Neurological Disorder (FND), a condition where brain signals aren’t always reaching the body.
Maddison receives intensive treatment from an NHS pain team, regular physio and sees a psychologist.
Michelle and Will want her to have private physio and other specialist treatment such as occupational therapy and hydrotherapy.
They have set up a JustGiving page and last month Will and pals walked the Scottish Highlands — 93 miles in five days — to raise £15,000.
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Maddison organised a fun day and said: “I hope my fundraising will help others. We’re in this together.”
Michelle added: “It’s not impossible for Maddison to get better. She can recover and have a normal life.”
