Aussie Dad’s mission – I had two months to save my girl’s life

He's a hero!

When his little girl was diagnosed with a rare condition, Damien Jordan was heartbroken.

So, when he was told there was a way he could help save her life, he didn’t hesitate to step up to the challenge.

Here, he tells his story in his own words….

As my feet pounded the pavement, sweat dripped down my forehead and back.

Just a little bit further, I told myself, determined to push forward.

Though I’d never been much of a runner, I had a crucial incentive – to save my little girl, Bridie.

Born in January 2017, she had beautiful big blue eyes just like her mum, Laura, and big brother, Dusty, then three.

But shortly after her arrival, doctors pointed out that her head was measuring quite large.

Within days, she was diagnosed with sagittal craniosynostosis, meaning that the centre tissue inside her skull was fused, preventing her head from growing wider as she aged.

Doctors explained that she’d need surgery to have springs placed inside her skull to allow her skull and brain to form properly.

They also noticed that her limbs and fingers were measuring quite short, so Bridie underwent genetic testing to find out why.

In the weeks that followed, Laura and I spent hours googling her symptoms and were heartbroken by some of the information we found.

Will she ever ride a bike or learn to play like other kids? we worried.

I felt completely overwhelmed, but through it all, Laura was my rock.

‘We’ll get through this,’ she assured me.

(Credit: Supplied)

When the results came back, we met with the specialist.

‘Bridie has Mainzer-Saldino syndrome,’ he said, explaining it was the reason the bones in her body and skull were abnormally formed.

He also revealed the rare condition would cause retinal degeneration, meaning she could go blind and develop kidney disease.

Stunned, Laura and I could hardly believe the news.

We’d always thought those issues affected older people, but our girl was only 12 weeks old.

Still, it was a relief to finally have answers.

Though doctors told us there were only 20 cases worldwide, Laura soon discovered many more through a Facebook group for families of children living with the rare condition.

While each child was impacted differently, many of them had already experienced some level of kidney failure.

So, when Bridie fell ill in 2019 with a bout of influenza, gastro and pneumonia, it took a toll on her little body.

Sadly, the medications she needed to help her recover weakened her kidneys even further.

By December that year, her specialist revealed they were only functioning at 30 per cent.

‘If it gets any worse, she will need to start dialysis,’ he admitted, adding that a transplant might be required sooner than we first thought.

In the meantime, we just had to concentrate on keeping our girl happy and healthy at all costs.

Having faced so much trauma in her short life, due to the invasive ops on her skull, Bridie was non-verbal, but she learned to communicate key words using sign language and she loved to hum and dance along to her favourite songs.

(Credit: Supplied)

Sadly, by February 2020, when Bridie was three, her kidneys weren’t absorbing nutrients the way they should, and it was likely they’d only last another two years before failing completely.

It broke my heart, and I knew I had to step up to help save my girl.

So I volunteered to give her one of my kidneys right away.

After undergoing multiple tests, I was declared a match.

But there were still several hurdles, I had to overcome before I had the all-clear to donate.

‘You’ll have to lose 15 kilos before we consider you fit to transplant,’ the specialist told me in June.

He gave me two months to get into shape. At 96.5 kilos, I wasn’t overweight, but I needed to lower my BMI to be fit for the surgery.

Determined to do whatever it took to save my little girl, I cut back on beer and pub meals, such as chicken schnitzels and chips, and stuck to eating healthier options, such as lean meat and vegetables, instead.

I also invested in a new pair of joggers and went running every day.

Incredibly, by August, I had managed to shed enough weight and was given the all-clear to go ahead.

Then we explained it to the kids.

Bridie was too young to understand, but Dusty, then six, couldn’t wait to share the news with his schoolmates.

‘They said good luck with donating your echidna,’ he told us when he came home.

It left Laura and I in stitches, but it was good to know their hearts were in the right place.

(Credit: Supplied)

In November, the big day finally arrived.

Wheeled into theatre around 8am, I was racked with nerves.

When I came to several hours later, Laura was there by my side.

‘I’m so proud of you,’ she smiled.

Thankfully, by 8pm that night, Bridie’s surgery was also deemed to have been a success.

After two days, I was finally well enough to visit my precious daughter.

Giving her a big cuddle, it felt so good to see a smile on her face.

And over the next eight weeks, our brave girl had more energy with each day that passed.

Now, three months on from the op, Bridie, four, is back to being her cheeky self and loves nothing more than dancing along to Emma Wiggle.

Though she is still non-verbal, she uses sign language well and loves zooming around on her bike with her big brother.

When we talk about my kidney, she always points to her tummy.

People have called me a hero, but I think any parent would do the same to save their child.

Seeing the smile on our beautiful Bridie’s face makes it all worthwhile.

(Credit: Supplied)

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