It’s a rare condition (Pictures: PA Real Life)
A one in a million condition means that a bride-to-be was born without a collarbone and her spine is twisted into a C shape.
It makes it impossible to have a child, so she’s desperate for private surgery so she can start a family and walk down the aisle on her wedding day.
Cleidocranial dysostosis (CCD) is a birth defect affecting teeth and bones present in one in every million people.
Amy Stewart, 27, has been in agony since falling down a set of stairs and fracturing her spine in August 2020.
She was diagnosed with CCD after being born with a wide forehead, an open skull at the top, no collarbone and three rows of teeth. She went on to have countless operations while facing bullying at school.
None of that stopped her from later finding a job with the emergency services and falling in love.
But Amy, of Milton Keynes, Buckinghamshire, fears that without £38,000 for private treatment, she will still be in agony when she marries her fiancé, Matthew Woollard, 38.
Amy and Matthew want children (Pictures: PA Real Life)
The couple, who both work in emergency services, are due to marry in June 2023.
Amy also suffers with kyphoscoliosis – a spine that curves to the side and forwards or backwards at the same time.
She said: ‘My spine is much weaker than most people, so when I fell down a flight of stairs not only did I fracture it, but my kyphoscoliosis has deteriorated rapidly, reducing my quality of life significantly.’
Surgery was not an option with the NHS, which is why she’s having to look privately.
She said: ‘The operation is a spinal fusion, in which two metal rods will be inserted down either side of my spine, which will be screwed through each vertebra to hold them in place.
Amy after recent knee operation (Pictures: PA Real Life)
‘These then clamp the spine, providing massive support, straightening it, and meaning I won’t be in pain all the time.
‘A lot of the bad muscle will be cut away, which the specialist also thinks is causing much of the pain.
‘He’ll be moving my spine over my ribcage, where it’s currently being squashed, so it will have room to move again and will be as it should be.
‘At the moment, there is no room for a baby to grow – it would be crushed – so this operation will, hopefully, mean I can have a family.’
Matthew proposed to Amy in December 2020 (Pictures: PA Real Life)
Though CCD can be genetic, in Amy’s case she’s the first in her family to have the condition.
She said: ‘No one really knows why it happened.
‘My first operation was at the age of nine to pull out six baby teeth, then cut my gums open and put metal chains on to the adult teeth that were still underneath.
‘They were like braces, fixed with metal chains, to pull my teeth into position.
Amy with her dad Paul, who she’d like to walk her down the aisle (Pictures: PA Real Life)
Amy with her mum Christine (Pictures: PA Real Life)
‘I would receive unpleasant anonymous text messages from random numbers, which was very upsetting.
‘Because of this, until I started fundraising, a lot of people didn’t know about my condition, as I’ve never really wanted to talk about it.
‘Luckily, I’ve now discovered an online support group, which has been a great help, as I’ve found other people who have the condition that I can talk to.’
In 2017 she met Matthew through work, and two years later they began dating.
Amy as a child (Pictures: PA Real Life)
Amy as a child with dad Paul (Pictures: PA Real Life)
Despite her condition, Amy’s pain before her fall was manageable, and she was even training to run the London Marathon.
She said: ‘When I hit the bottom, I was in a lot of pain.
‘Matt called an ambulance straight away and the paramedics put me on a stretcher, but I couldn’t feel one of my legs.
‘They were touching my feet and I couldn’t feel it, so that was obviously terrifying.
‘Then I was worried about what damage had been done to my back, because I know that my spine is more vulnerable than most people’s.
Amy and Matthew after Amy’s most recent jaw operation (Pictures: PA Real Life)
Baby Amy with her older siblings Gary and Claire (Pictures: PA Real Life)
‘It was bad at the beginning, straight after the accident, but I could still sleep at night.
‘Gradually, as time has passed, I’ve had to take more and more painkillers and even then, they hardly control the pain.
‘At night, I can, literally, be crying in agony.
‘My curved spine also gives me very bad heartburn, so the entire core of my body is really hurting.’
She continued: ‘I could have the surgery to straighten my spine as soon as January 2022, if I can raise the money.
Amy with older siblings Gary and Claire (Pictures: PA Real Life)
‘It takes a full year to properly recover, so I would be pain-free in time for my wedding.
‘My twisted spine also means, at the moment, I wouldn’t be able to have children.
‘We are hoping the operation would change this, which would mean everything to us both.
‘We have both always dreamed of being parents. We both come from a big family, so it would be wonderful to have children.’
But starting a family isn’t straightforward for Amy and Matthew, as Amy has been told by a medical professional there is a 50/50 chance of her passing her condition on.
‘But I will be eligible for IVF, and they can do amazing things to remove the gene and all sorts now,’ she said.
Amy and Matthew are due to get married in 2023 (Pictures: PA Real Life)
The situation has affected Amy’s working life too, as she can’t take painkillers at work as they make her drowsy.
But, this means she’s had to reduce her hours and lower her income.
She said: ‘Because of all the medication, since the accident I have either been feeling really drowsy, or I’ve been in agonising pain.
‘I am just so grateful to Matt and to my friends, my colleagues and my family for the kindness they have shown me.
‘I am also so grateful to the people who have already donated to my GoFundMe. I have had some lovely messages from strangers, who have given money.
‘When I have the surgery, I am going to start a blog, documenting my progress, so people can see where their money has gone. It will also, hopefully, help other people in the same situation as me.
‘I can’t put into words what this help and support means to me, but this operation, if I can have it, is going to completely change my life.’
To donate to Amy’s GoFundMe, click here.
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