"It kept blocking her airways - she would stop breathing up to 15 times a day. The first time it happened, the nurses had to pick me up off the floor," the Melbourne-based mum recalls.

Baby Everley was born with her upper jaw basically sitting at the back of her head. Melbourne-based mum, Jo, shares her story with journalist, Carrol Baker.

One morning I woke up and there was blood and fluid everywhere; I was 10 weeks pregnant. Doctors said it was highly likely that I would miscarry, all I could do was hope with all my heart they were wrong. I got to 14 weeks, and a scan showed kidney issues and that the foetus wasn’t developing the way it should, it was very small.

It was already classified as a high-risk pregnancy as I had previously lost a baby with Down syndrome. From then on, I had to have weekly scans where they would focus on the kidneys, heart and brain, and do measurements. I kept thinking here we go again; I was so worried that I would miscarry. It was a very emotional time.

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They couldn’t tell me what was wrong with my baby. We had some of the world’s leading foetal doctors at my bedside and as the weeks progressed, they kept shaking their heads saying, “We just don’t know.” The subject of termination was raised constantly – and I became so angry. I said, “I know you have a duty of care and you have to cover all bases, but can we just park this conversation?”

The pregnancy progressed, and I had an emergency caesarean at 38 weeks. When Everley was born, her upper jaw was basically sitting at the back of her head. It kept blocking her airways, and she couldn’t breathe on her own. Then she would just stop breathing. The first time it happened I was a mess, doctors and nurses had to basically pick me up off the floor.

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They did surgery when Everley was seven weeks old. They broke her jaw and inserted metal, and every eight hours they’d have to wind her jaw up. It was the worst three weeks of our lives. Everyone kept saying to us – she won’t remember this, but it has scarred my husband Rick and me forever. Everley had to be put on life support and in an induced coma because the pain was horrific.

We didn’t get Everley’s diagnosis until she was one year old. She has a genetic disorder called Kabuki syndrome – all of her body systems are compromised in one way or another, it’s a very complex medical condition. Even some specialists we’ve spoken to had to Google it – it’s so rare.

At the moment, we are struggling with her kidneys, she is producing a lot of stones. The pandemic has made it really hard, unless you are really sick at the moment, hospitals just want to send you home.

A lot of kids with her syndrome have passed away with COVID-19, they have a lot of upper respiratory problems, as well as other health issues. It's been hard with the pandemic because Everley has no immune system. Even just a family outing can be a challenge for us, we have to be so careful.

Because of what she has been through, Everley has a massive fear of anyone in scrubs – she thinks they’re going to do something to her that will hurt, and if she sees a medical bed, she starts to cry.

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She is peg fed, and constantly vomits because of her stomach issues. Sometimes there are tears and tantrums, she shuts down and becomes non-verbal when she feels traumatised.

Everley is four-and-a-half now and has had 23 surgeries and interventions, but she continues to kick goals and prove doctors wrong.

She is walking and started with a walker when she was two. It was amazing to see her take those first steps. Before that, she was just on her back all the time, she couldn’t lay on her tummy.

Her speech has come such a long way, too in the last year. She has her own little language that I have to ask my nine-year-old daughter Mila to interpret! And with her younger brother Arlo who is three, they also share a special language – they’re like an old married couple.

We received a lot of support through Very Special Kids (VSK), they have been a lifeline. I wish I had known about them the day that Everley was born, I would have picked up the phone and said, “I need help.” I’ve been to VSK parents support coffee mornings they put on, it was great to be with parents who understood, and they have an amazing sibling program Mila can attend in the holidays – there is so much focus on the child who is unwell, siblings need support too.

Everley’s condition has opened up a whole new world to us – the disability sector is massive and it needs work, so many families need so much help.

Very Special Kids (VSK) is a registered charity that provides holistic palliative care for children and young people with life-limiting conditions, and tailored support for their families.