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Bride-to-be with agonising “one in a million” condition meaning she was born with no collarbone needs private surgery to walk down the aisle pain free

A bride-to-be with a “one in a million” condition that saw her born with no collarbone and whose spine is agonisingly twisted like the letter C – making it impossible to carry a child – is desperate for private surgery so she can walk down the aisle pain free and start a family.

Born with cleidocranial dysostosis (CCD) – a birth defect affecting teeth and bones present in one in every million people, according to medical experts, Amy Stewart, 27, has been in agony since falling down some stairs and fracturing her spine in August 2020.

Diagnosed with CCD after being born with a wide forehead, an open skull at the top, no collarbone and three rows of teeth, she flourished despite countless operations and being bullied at school – landing a job with the emergency services and falling in love.

Amy and Matthew met through their work (PA Real Life)
Amy and Matthew met through their work (PA Real Life)

But Amy, of Milton Keynes, Buckinghamshire, now fears that unless she can raise £38,000 towards private treatment, she will still be in agony when she marries her fiancé, Matthew Woollard, 38, a fellow emergency services worker, on 1 June, 2023, and that they will never be able to have children.

Also suffering 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.”

Seeking private help when her NHS doctors did not see surgery on her spine as an option, according to Amy, she was offered a lifeline by a private specialist who can perform a spinal fusion as soon as January 2022 – making the prohibitive factor the cost of around £40,000 for surgery and aftercare.

Now Amy has launched a GoFundMe page asking friends, family and kind strangers to help her raise £38,000 towards the operation, which she says will change her life and enable her to have a family with Matthew.

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.

“These then clamp the spine, providing massive support, straightening it, and meaning I won’t be in pain all the time.”

Amy after recent knee operation (PA Real Life)
Amy after recent knee operation (PA Real Life)

She added: “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.”

Amy and Matthew are due to get married in 2023 (PA Real Life)
Amy and Matthew are due to get married in 2023 (PA Real Life)

It has been an arduous journey for Amy, one of three children and the only one to be born with CCD.

She said: “It’s a genetic condition. It can be passed down from parents, but mine isn’t – it’s a spontaneous case. No one really know why it happened.”

As well as now having a spine twisted at a 70-degree angle, she was born with a row of baby teeth, a row of adult teeth beneath them and then a third set of teeth – as well as having no clavicles, or collarbone.

Amy and Matthew after Amy’s most recent jaw operation (PA Real Life)
Amy and Matthew after Amy’s most recent jaw operation (PA Real Life)

She said: “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.”

At points left with “gappy teeth” and also having a “big forehead,” which is a characteristic of the condition, her appearance and the fact she was frequently off school attending medical appointments, meant she was often bullied.

Amy, who was also able to make her shoulder blades touch as a child, because of her lack of collarbone, said: “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.”

Amy as a child with dad Paul (PA Real Life)
Amy as a child with dad Paul (PA Real Life)

Meeting Matthew at work in 2017 was another great boost for Amy, although they only became a couple in 2019, after he invited her to dinner at Nando’s, followed by a trip to the cinema for their first official date.

They moved in together in March 2020 and Matthew proposed later in the same year.

Amy said: “We were visiting our brand-new unfurnished house. I had my coat on, about to leave, when Matt started getting really emotional and saying, ‘We’re going to make such amazing memories here.'”

Amy as a child with mum Christine (PA Real Life)
Amy as a child with mum Christine (PA Real Life)

She added: “Then he started crying and got down on one knee, so we were both crying, and he asked me to marry him.”

Despite her condition, Amy’s pain was then manageable, and she was even training to run the London Marathon, when she fell down a flight of stairs at her parents’ house in August 2020 and everything changed.

She said: “When I hit the bottom, I was in a lot of pain.”

Amy with her dad Paul (PA Real Life)
Amy with her dad Paul (PA Real Life)

She added: “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 with her mum Christine (PA Real Life)
Amy with her mum Christine (PA Real Life)

Over time, the pain in her back has become virtually unbearable.

She continued: “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.”

Amy after a jaw operation (PA Real Life)
Amy after a jaw operation (PA Real Life)

She added: “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.”

While Amy is very grateful to the NHS for all the treatment she has received over the years, her doctors have offered pain relief, rather than surgery on this occasion, so she has turned to private medicine for help.

She said: “I could have the surgery to straighten my spine as soon as January 2022, if I can raise the money.

“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.”

Matthew proposed to Amy in December 2020 (PA Real Life)
Matthew proposed to Amy in December 2020 (PA Real Life)

She added: “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 may still be far from straightforward for Amy and Matthew, as she has been told there is a 50/50 chance of her passing her condition on.

She said: “It can be passed down from parents, but mine wasn’t – it’s a spontaneous case that literally came from nowhere.

“I’ve seen a geneticist, whose says I have a 50/50 chance of passing it down, though.

“But I will be eligible for IVF, and they can do amazing things to remove the gene and all sorts now.”

Amy with older siblings Gary and Claire (PA Real Life)
Amy with older siblings Gary and Claire (PA Real Life)

Being in constant pain has also massively impacted Amy’s ability to work.

She cannot take painkillers when she does work, as they make her too drowsy, but the pain means she can only do drastically reduced hours – affecting 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.”

She added: “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.”

Baby Amy with her older siblings Gary and Claire (PA Real Life)
Baby Amy with her older siblings Gary and Claire (PA Real Life)

She added: “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.”

Matthew cannot wait to see Amy regain her quality of life.

He said: “When the private consultant told us he could perform this operation, we both walked out of his room and burst into tears.”

He added: “As well as the physical pain, the mental anguish all this has caused for Amy has been terrible.

“Sometimes, she’s just cried and cried and not known what to do. It’s been horrible to see.

“She is the most incredible, giving person, and so deserving of every single bit of support and help that she is going to see.”

“For her to actually be able to walk down the aisle on her dad’s arm on our wedding day and be pain free is going to be the most incredible experience in both our lives.”

* To donate to Amy’s GoFundMe, go to: www.gofundme.com/f/stewartoneinamillion