An Unbreakable Bond

Born with a unique condition, Hailey’s girls are helping each other

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.