My girl was burning from the inside

WARNING: GRAPHIC IMAGES Doctors thought my girl had chicken pox, but she ended up on life support.

Here Luke Sirolli, 38, tells the story in his own words. 

Tucking my girls into bed, I flicked off the lights. 

‘Goodnight sweethearts,’ I whispered to Indi, five, Chloe, four, and Quinn, one.

Later, my wife Susie and I were about to drift off when Chloe walked in at 11pm.

‘I’m not feeling very well,’ she said.

When we saw a red rash on her arms we were instantly worried.

Dialling an out of hours doctor, he quickly arrived to assess our little girl.

‘It looks like chicken pox,’ he said. ‘If it gets worse in the morning, go and see 
your GP.’

Popping Chloe back in bed, we were relieved she didn’t have anything more sinister.

But the next day her eyes were red and puffy and the rash had spread.

‘Try calamine lotion,’ the doctor advised, reaffirming it was just chicken pox.

The following morning though, when I went to rouse Chloe, my heart dropped.

Her eyes were crusted shut, her lips were blistered and bloody and the rash had taken over her whole body.

She’s swollen beyond recognition, I thought, horrified.

‘We need to go to hospital,’ Susie said.

In a panic, we drove Chloe to our small, local hospital where her fever spiked.

Nurses quickly wrapped her in cold towels and we were ushered into an ambulance, which sped to the Princess Margaret Hospital for specialist care.

‘You’re going to be alright,’ I soothed my frightened girl.

There, Chloe was taken out of my arms and rushed off by a team of doctors.

‘What’s going on? Where are you taking her?’ I asked. 

‘We’re placing her in quarantine,’ a nurse said, worried it might be a contagious disease.

Susie and I were dressed head to toe in masks and gowns so we could be near her. Then we watched helplessly as specialist after specialist raced around Chloe trying to figure out why she was so sick.

The longer it went on, the more her condition worsened. The blotchy rash turned into burning pus-filled lesions, which covered every inch of her skin. 

Then, scans and tests uncovered more devastating news.

‘The lesions are growing inside her body as well,’ we were told.

With them covering her bowel, throat, genitals and eyes, Chloe’s prognosis wasn’t good.

‘She is essentially burning from the inside out,’ a specialist said.

Our girl in hospital
Our girl in hospital (Source: Supplied)

Not knowing what caused it, she was treated as if she had third-degree burns. Wrapped in silver bandages, the lesions were scraped from her eyes and drops were administered every three hours.

She was also tube fed.

I’m watching her die, I crumbled, looking at her chest barely rise.

But Chloe never gave up.

Every day, the lesions disappeared as her skin healed until she was eating by herself. Two-and-a-half weeks later, our brave little battler left the hospital.

‘Come on guys, let’s go,’ she smiled.

She is so brave
She is so brave (Source: Supplied)

With ongoing issues with her eyes, we still had to visit a specialist every few days. 

‘It’s like sandpaper is constantly scratching at her eyeballs,’ he told us. 

Holding her down, Susie and I would have to pry open Chloe’s eyes every few hours to administer drops.

‘I think there’s something more going on here,’ the specialist said.

After four months of tests, Chloe was diagnosed with Stevens-Johnson syndrome (SJS). A rare serious disorder, it causes skin tissue to die and fall off. It could have been deadly.

It’s usually a reaction to medication or an infection, but we had no idea why this happened to Chloe. 

And for our girl, it had caused extensive scarring 
in her eyes.

In shock, I grabbed Susie’s hand as we both absorbed what was in store for our daughter’s future.

‘You might not ever be able to see properly again,’ we told her, honestly.

Legally blind, there were a few surgeries we could opt for to make her more comfortable but unfortunately none of them would restore her sight.

But with a zest for life, Chloe didn’t let anything hold her back.

She jumped straight into Braille, learnt how to use a cane and got some super cool blackout sunglasses.

‘I’ll read the story to you Daddy,’ she said, tracing the Braille with her finger.

Our family
Our family (Source: Supplied)

Now, Chloe is eight, and over the past four years she has undergone over 50 operations, including 
five corneal transplants.

But due to severe scarring the transplants have never returned her sight and when she is older she might have to have her eyes removed.

Understanding that she will have hundreds more surgeries throughout the rest of her life, she is a champion.

‘What’s next Dad?’ she asked after choir practice.

With her ongoing medical costs for life we started a fundraising page,

She is our warrior princess. We’re so proud.

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