Aurelia, 3, is one of six people in the world with condition

Up to seven times an hour, every hour, her brain doesn’t tell her muscles to take in the air and so, for a brief period, she lies breathless.

It’s part of her devastating condition which is only one of six recorded cases on the planet - a VPS4A-related neurodevelopmental disorder.

It has wreaked havoc with how her body functions and central sleep apnoea is just one of the issues associated with her condition.

Aurelia can’t sit up, walk, stand or crawl unaided - it’s why her favourite hobby is to be swung around by dad Trevor.

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Her condition is a random genetic mutation, one which hasn’t been inherited. It means, among other issues, she is blind, despite having an operation to remove her cataracts at just 12-weeks-old.

She has to be fed overnight through a tube in her tummy and cannot even play with a cuddly toy alone.

Yet, despite all the hardships she has faced, Aurelia continues to tackle life with a brave smile.

“She’s completely non-verbal at the moment,” mum Sarah explained, “but it doesn’t stop her from shouting, that’s for sure.

“We can deduce her mood but most of the time the sounds are unrecognisable, it can be really tough.”

Aurelia has an "infectious" smile

Sarah, 36, and husband Trevor, 38, have tried to find a way for their only child to be taught sign language but she also suffers from dystonia.

This movement disorder means a person’s muscles contract uncontrollably, meaning Aurelia often waves her hands about, while not being conscious of doing so.

Sarah added: “It’s not that she doesn’t have the strength to stand or control her body, because she is quite strong, it’s just she has very poor co-ordination, she can’t tell the parts of her body what they need to do - everything is wobbly.

“She doesn’t sleep well, often she will stay in with us. She has an oxygen machine which condenses the air and makes the oxygen percentage higher than it would usually be to help balance it out for when she doesn’t breathe.

“We’re happy enough that we’re doing what we can be doing, and that she shouldn’t stop breathing permanently, but as it’s such a rare condition you just don’t know. Regardless, her brain isn’t getting the oxygen it needs all the time. Short-term this isn’t too drastic but the concern is if repeatedly long-term she’s not getting the oxygen she needs then it could really impact her development.”

Aurelia cannot walk unaided

Sarah and Trevor have started working with a speech and language therapist, but they only receive an hour of physiotherapy a month on the NHS.

Anything else has to be funded by Sarah, a finance manager, and Trevor who is a self-employed floor plan designer.

“It took a while to come to terms with the initial issue and the then increasing list of disabilities, and what they meant for all of us,” Sarah explained.

“Her life isn’t going to be what we’d originally hoped or imagined it would be, it’s not easy. But, she’s our only child and for all her difficulties she is so inspirational.

“She’s always smiling and giggling and just wants to play. She’s not aware of her differences and is really happy, this is just our normal now.

“She is trapped by her body but hopefully we are giving her the best chance of telling us what she’s shouting about all the time, because it’s clearly very important.”

The goal is to take Aurelia to the world-renowned NAPA centre in Boston, US, for physical therapy. But at £10,000 per course, coupled with the logistics of getting there, it’s just a dream for now.

Sarah and Trevor have launched a fundraiser in an attempt to raise £30,000 to help try to achieve this, while also giving Aurelia a fighting chance in taking on her other needs, including private therapy and to adapt their house to suit her.

Sarah said: “She’s working incredibly hard. Who knows what she can achieve, it’s all unknown and there’s no one else to compare her progress to. We just want to give her every chance we can.”

To support Aurelia visit www.justgiving.com/campaign/AureliasAdventures or donate £5 by texting ‘Aurelia’ to 70085. Similarly, you can follow AureliasAdventures18 on Facebook.