On the night before the Great South Run, Maddie Martin found it difficult to sleep.
The eight-year-old was looking forward to taking part in the 1.5km mini race for children, but it wasn’t excitement that was keeping her awake.
The Leigh Park youngster has spina bifida which causes pain in her legs and it was the constant ache that stopped her sleeping.
But still the plucky schoolgirl was determined to complete the Portsmouth race and raise money for the support group that had helped her.
And Maddie’s bravery didn’t end there. The youngster needs a wheelchair to get around, but climbed out and walked the last 100 metres to the finish line.
Dad Rob, who pushed her around the majority of the route, is still amazed by Maddie’s courage and says she is an inspiration to others.
‘She suffers from a lot of pain. Even when she’s at her best, what would be a real problem for us is background pain for her. She just gets used to it.
‘But that morning she was in agony. We were up at 2am, she finally got to sleep at about 5am and then we had to get up and travel to Southsea.
‘When we were there I said Maddie, do you really want to do this? We can raise the money anyway but she wouldn’t hear of pulling out.’
A few of Maddie’s six siblings were taking part in the junior and mini races. And they inspired her to get out of her chair for the last leg.
‘We argued about it for a while but she wanted to do it so much. I think she thought if the younger ones could do it she wasn’t going to be left out,’ says Rob. ‘I knew how much pain she was in and seeing her do that was the proudest moment of my life. I thought ‘this is what it’s all about really’.
Mum Michelle says: ‘Maddie is lively, headstrong and stubborn. But that’s exactly what helps her get on in life. Nothing is going to beat her and I’m sure that attitude does her the world of good.’
An orthopaedic consultant once tried to explain Maddie’s pain to Rob ‘He said after walking 50 yards her legs feel like ours would if we ran the London Marathon with no training.’
And her walk to the finish line becomes even more impressive after learning that she was suffering from damaged tendons and had to receive hospital treatment shortly afterwards.
‘That wasn’t caused by the Great South Run but it shows just how brave Maddie is,’ says Rob.
His daughter was diagnosed with spina bifida when she was a baby.
There are different types of the condition – a split in the spine which causes damage to the spinal cord – and Maddie was diagnosed with what should have been the mildest. But there have been complications.
She has a tethered spinal cord which means the cord (the bundle of nerves that send messages to and from the brain) attaches to her spine and could stretch as she grows, causing damage. If left untreated this could lead to paralysis from the waist down.
The muscles in Maddie’s legs are underdeveloped and very weak. She can’t wiggle her toes on one foot and suffers bladder problems.
Rob says: ‘When she was diagnosed, it was like going into a black hole. The condition is so complicated and every case is unique.’
He says the family have received a lot of support from the Southern Hydrocephalus and Spina Bifida Foundation – the group that Maddie and her family raised £300 for by doing the Great South Run events.
Life hasn’t been easy for the Martins. Rob has given up a well-paid job to become a full-time carer and he and Maddie live separately from Michelle and the other children. But they are still very much a family.
‘It was too difficult to adapt a whole house for Maddie’s needs so this is the best arrangement. Maddie and Rob are in a ground floor flat,’ explains Michelle, who lives in Paulsgrove. ‘She needs her space. She can be up in the night in pain and it would be very difficult here. But she comes in before school every morning and has her tea here .’
Rob says giving up work wasn’t easy. ‘It was a good job. But it was hard keeping up with Maddie’s appointments and giving her the life she deserves.’
The couple take inspiration from Maddie who has had several operations. ‘She seems to take it all in her stride, better than we do sometimes,’ says Michelle. ‘As long as she can have a Burger King and some balloons, she’s okay with having an operation on her spine.’
Maddie loves crafts and is doing well academically, partly because she spends time reading when she can’t run around with her siblings.
But she tries to do the physical things. ‘They’re quite competitive,’ laughs Michelle. ‘The others don’t give her special treatment. She’s just Maddie. They get upset when she’s in hospital, though.’
Maddie faces frequent and painful hospital tests, and her parents never try to shield her from the serious nature of her condition. ‘If something is going to hurt we don’t tell her otherwise,’ says Michelle.
But she has been a huge positive influence on her family. ‘People ask how we do it. But you just adapt,’ says Michelle. ‘And I think this actually makes us closer as a family.’
Spina bifida means ‘split spine’. A fault in the development of the spinal cord and surrounding bones (vertebrae) leaves a gap or split.
A healthy spine is closed to protect the spinal cord, a bundle of nerves that sends messages back and forth between the brain and the rest of the body.
Because of the opening in the spine, these nerves may be damaged and messages to and from the brain to the muscles can become confused or not get through.
This can lead to difficulty in performing certain functions and may result in paralysis.
There are different types of spina bifida, some with more severe consequences than others.
Each patient is unique and can display a range of symptoms. These can vary widely in severity.
They may include limb paralysis and bladder and bowel problems.
Some patients also have hydrocephalus. This is where there’s too much fluid in the brain. This excess fluid leads to increased pressure which can damage the brain tissue.
Patients and their carers can receive advice from charity Shine. For information visit shinecharity.org.uk or call (01733) 555988.
Local group the Southern Hydrocephalus and Spina Bifida Foundation, provides support and days out for families and individuals. Call Emma Kelly on (07969) 104367 or email email@example.com.