Madeline's mum spends thousands on electricity every month just to keep her breathing

April was forced to drive an unregistered car for months because she couldn't keep up with the financial burden of caring for a seriously ill child in the cost of living crisis.

The Newcastle mum of three was forced to give up her work as a coroner when daughter Madeline was diagnosed with a string of complex health issues as a baby.

A decade later, she can barely stay afloat as inflation rises and her daughter's health deteriorates.

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"I can't manage things like I used to," April told 9honey.

"I prioritise paying my rent, making sure we have a roof over our heads, but the emotional and mental toll of of this has left me with so much anxiety."

Have you got a story? Contact reporter Maddison Leach at mleach@nine.com.au

Madeline was born prematurely at 32 weeks and was diagnosed with silent asthma soon after.

Unlike typical asthma, which is characterised by wheezing or coughing, Madeline's symptoms were almost completely silent.

"Her breathing would become really shallow, often she'd get really severe chest chest recession, a throat tug and nasal flaring," April said.

"Her skin around her stomach and her back would suck in completely underneath her rib cage with every single breath."

At a few months old, Madeline was also diagnosed with a lung condition called bronchomalacia that made breathing difficult.

Then doctors found she had two heart conditions that can cause rapid spikes and drops in her heart rate.

Her case was deemed "complex" and staying on top of Madeline's health became a full time job, limiting April's ability to work and costing her a small fortune in medical and other bills.

It's only become more expensive in recent years.

If Madeline gets too hot or cold she struggles to breathe, so April has to run the aircon constantly to keep their home at a consistent temperature.

April also had to pull Madeline out of after school care and went three months with an unregistered car because money has been so tight.

Accessing financial support can be overwhelming and April admits she struggles to focus on all that paperwork because Madeline has to be her number one priority.

She has also missed out on vital time with her older children, Summer, 21, and Isaac, 12.

"I've missed events, birthdays, celebrations. There's days or weeks on end when I don't get to see them," she said through tears.

"It's taken a huge toll on on me emotionally. I wish I could work and be their mum and be there for them."

The most heartbreaking part is Madeline doesn't appear to be getting any better.

Madeline's oxygen levels often drop too low, causing her to pass out and April can't count how many times she's found her little girl lifeless and blue on the bathroom floor.

"This happens maybe three times a week," she said.

The first instinct is to take Madeline to the emergency department, but that risks exposing her to infections her already struggling body just can't fight off.

She sees seven different medical specialists, has undergone multiple surgeries, attends fortnightly checkups and takes daily medication that come with significant side-effects.

Despite all this, she's still seriously ill and it's unclear what – if anything – will help her long-term.

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April is desperate to improve her daughter's quality of life but doctors are "stumped".

"I'm mentally exhausted. I need answers, I need help, I need to know what's going on with my child," she said.

"Because I feel like I'm going to lose her, and I don't know what to do."

Despite the uncertainty, 10-year-old Madeline faces every setback with courage and she just keeps smiling, especially when she can visit the Starlight Room.

It's the safe space she can go to for a break when hospital life gets overwhelming, and April can't put into words how special it feels to see her little girl light up with joy every time they visit the Starlight Captains there.

"They know her by a name, they allow the children to play and engage with one another, helping them feel like they're included rather than different," she said.

"The opportunity to have activities without focusing on medical issues. It's invaluable for a child's mental health. It's crucial."

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Madeline's future is still uncertain and as hard as it is for April to see her daughter struggle, she knows Madeline's a fighter.

She just hopes someday soon there's a breakthrough that will turn her "complex" medical case into something more manageable for the whole family, so Madeline can enjoy the childhood she's been missing out on.

Madeline and her family are sharing their story in support of Starlight's annual Tax Appeal, which aims to raise $1.3 million to make hospital a happy place for seriously ill children. Learn more and donate here.

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