Cradling my tiny girl in my arms, my heart swelled with pride.
With a shock of white hair and light blue eyes, she looked just like my husband Chayd, then 18.
Naming her Arliyah, we felt on top of the world.
High-school sweethearts, Chayd and I had always dreamed of starting a family together. But as first-time parents we had missed some vital clues about our daughter’s wellbeing.
It wasn’t until she was three days old and a nurse mentioned her eyes didn’t look quite right that I started to fret.
So, the following day we met with an ophthalmologist. ‘I’m sorry but she’s blind,’ he said, explaining it was caused by albinism.
The genetic condition reduces the amount of melanin formed in the skin, hair and eyes. It meant she had no pigment, was at greater risk of skin cancer and more sensitive to the sun.
Shattered, it felt like the room around me was spinning.
‘My best advice would be to move south,’ he said bluntly before leaving the room.
Devastated, I burst into tears. That morning, I’d been blissfully bonding with my bub. But now, her future seemed so uncertain.
Will she make friends or be bullied her whole life? I fretted.
At school, people often joked that Chayd and I would have albino children because we both had blonde hair and pale skin.
But I never imagined that it would come true.
Occurring in only one in 17,000 births in Australia, the gene had been passed down by both Chayd and me.
It was also likely that any further additions to our family had a 25 per cent chance of being born with the condition.
Overwhelmed and confused, I found it hard to accept.
‘Everything is going to be okay,’ Chayd soothed.
Still, for the first few months of Arliyah’s life, we treated her like a glass doll.
Then I stumbled across the Albinism Fellowship of Australia where I connected with other families who had children with the condition.
Reaching out for support, I formed close bonds with some of the parents.
‘There will be hard days when all you want to do is cry,’ one mum told me. ‘You will also have really good days where you look at your girl and see how amazing she is,’ she added.
As Arliyah grew, I came to learn how true that was.
To us, she was just an outgoing and courageous little girl and I forgot about how she looked to others.
So when people stared at her in public it often caught me by surprise.
‘Can I touch her hair?’ they’d ask.
Though I understood she stood out, I was shocked by people’s lack of boundaries.
Sometimes strangers wouldn’t even ask before stroking her beautiful locks.
While Arliyah liked the attention at first, she soon started getting frustrated.
Back at home, I’d break down to my parents.
‘You have to be brave for Arliyah,’ my dad Paul, 48, reminded me.
Then, when she was two, Chayd and I were blessed with the arrival of our son, Reagan. Although fair, he didn’t have albinism like his big sister.
Holding him, I was amazed as his little eyes stared right back into mine.
When our girl Mackenzie arrived two years later in September 2016, I knew right away that she had the condition. With stark white eyebrows and the same light hair as her older sister, there was no denying it.
Our girls will be able to help each other, I realised.
And when Chayd brought the kids in to meet her, Arliyah was over the moon.
‘Her hair is just like mine!’ she beamed.
Now, three years on, our girls are the best of friends.
Although they can both be incredibly stubborn, Arliyah is always looking out for her little sister.
Mackenzie is quite sensitive and can get scared easily, while Arliyah is very independent and often fierce in her endeavours.
Though both girls are classed as legally blind, they can make out blurry shapes and colours.
Mackenzie struggles more with her depth perception, meaning she sometimes panics when she has to use steps or slopes. They both need strong glasses to help them identify objects within arm’s reach.
Arliyah doesn’t let her vision hold her back though. Whether she’s climbing trees or taking a kick-boxing class, there’s nothing she won’t try.
Living with such poor vision does mean the girls’ other senses are incredibly heightened.
So when we’re in noisy places such as car parks, they become quite overwhelmed by all the sounds around them.
The girls are also cautious to stay out of the sun during the middle of the day when the UV rays are strongest.
Unfortunately, since the Queensland government classes the girls as able-bodied, it means we don’t qualify for a disability parking permit.
So recently we reached out to our local MP, Nick Dametto, who is fighting to have this changed in Queensland.
Despite what they’re battling, Arliyah and Mackenzie are the sweetest and happiest little girls you will ever meet.
While they still have many hurdles to overcome later in life, such as finding employment and living out of home, it doesn’t stop them from dreaming big.
Arliyah has even decided she’ll become a vet when she’s old enough.
Sharing an unbreakable bond, there’s nothing my girls can’t achieve.
