Mother reveals the earth shattering moment she was told her first born baby was blind and albino

A mother-of-three who has two daughters with albinism has spoken about the moment she was told her first child was blind.

Hailey and Chayd Brown’s daughters Arliyah, seven, and Mackenzie, three, have oculocutaneous albinism and are legally blind. 

The high school sweethearts from Townsville learned their eldest daughter was born with the rare condition when she was three days old.

Speaking to Daily Mail Australia, Ms Brown said she visited Arliyah – who was born five weeks premature – at the special care nursery.

‘They had a sheet hanging over her cot, I asked why and they said they think the lights hurt her eyes,’ she explained.

Hailey Brown (right with Arliyah) has spoken about the moment she learnt her first child had albinism 

Hailey and Chayd Brown's daughters Arliyah (centre), seven, and Mackenzie (left), three, have oculocutaneous albinism and are legally blind

Hailey and Chayd Brown’s daughters Arliyah (centre), seven, and Mackenzie (left), three, have oculocutaneous albinism and are legally blind

‘I didn’t think too much of it, then a nurse came in a couple hours later and sat me down and asked if I had heard of albinism before, I told her no and she then began to explain it.’

The nurse then asked Ms Brown for permission to bring an ophthalmologist in to assess the newborn. 

‘That night when I went home I told my now husband in conversation and said I wasn’t too worried,’ she recalled.

‘He was a little more [worried] than I was and started to google [the condition]. We rang my parents and told them. They also began to get worried and started to research.’ 

Ms Brown and her mother met with the ophthalmologist the following day.   

‘They had to use these little prongs to hold her eyes open, it was very traumatic to witness,’ she said. 

‘He had a quick look in her eyes and I remember making eye contact with my mum, at that stage it was like we knew without him even saying anything.

‘I walked over and picked up Arliyah as the ophthalmologist began to explain ”I’m so sorry, she is blind. She has Albinism, I suggest you get into contact with Vision Australia and move down south. She can never be in the sun”, then he walked out.’

Ms Brown said she instantly burst into tears and cuddled the newborn through her sobs. 

‘The days from there are a blur,’ she said, adding that they spoke with numerous doctors in the wake of the diagnosis.

Pictured: Reagan, five, Arliyah, seven, and Mackenzie, three, enjoy the pool

Pictured: Reagan, five, Arliyah, seven, and Mackenzie, three, enjoy the pool 

The high school sweethearts from Townsville learnt their eldest daughter Arliyah (pictured) was born with the rare condition when she was three days old

The high school sweethearts from Townsville learnt their eldest daughter Arliyah (pictured) was born with the rare condition when she was three days old

‘But most of what they told me went in one ear and out the other, I wasn’t ready to listen, I wasn’t ready to accept my precious tiny two kilogram baby had anything ”wrong” with her,’ she said. 

Ms Brown said her initial fears were about her daughter being bullied for her condition.

‘It doesn’t matter what these doctors say, because in the end I’ll just keep her with me 24/7,’ she said.

‘I won’t ever let her out of my sight, I’ll home school her and no one will ever know… How selfish of me.

‘I remember being most concerned about her being bullied and how others would treat her.’

Ms Brown admitted she knew 'nothing' about albinism and had thought albino was a nickname to describe people with fair skin. Pictured: The Brown children

Ms Brown admitted she knew ‘nothing’ about albinism and had thought albino was a nickname to describe people with fair skin. Pictured: The Brown children

'Arliyah (pictured) is the most independent, crazy, outgoing child who is as fierce as they come,' Ms Brown said. 'She does kick boxing and absolutely smashes it'

‘Arliyah (pictured) is the most independent, crazy, outgoing child who is as fierce as they come,’ Ms Brown said. ‘She does kick boxing and absolutely smashes it’

Ms Brown admitted she knew ‘nothing’ about albinism and had thought albino was a nickname to describe people with fair skin. 

‘Both Chayd and I where called albino in high school and people often joked we would have albino kids too,’ she said.

‘Albinism is a genetic condition so both the mother and father have to carry the gene.

‘For that to happen it is a 1 in 17,000 chance.’ 

The couple welcomed their second child and only son Reagan in 2014. The five-year-old does not have albinism.

Two years later their second daughter Mackenzie was born, suffering from the same genetic condition as her older sister.  

The couple’s second child Reagan, five, was not born with the genetic condition but their third child Mackenzie was.  

Hailey and Chayd Brown's daughters Arliyah, seven, and Mackenzie, three, have oculocutaneous albinism and are legally blind

Hailey and Chayd Brown’s daughters Arliyah, seven, and Mackenzie, three, have oculocutaneous albinism and are legally blind

Ms Brown said Arliyah is a ‘fantastic’ older sibling and guides her younger sister.    

‘The girls get on incredibly well, Arliyah is a fantastic big sister and a great role model for both her siblings,’ she said. 

‘She is also tough on Kenzie. Mackenzie will often complain about it either being too sunny or something and Arliyah will tell her to suck it up.’

The mum-of-three said it is common for members of the public to stare and make comments about her daughters but she has learnt to ignore it.

‘I just go about my day. It’s good the girls can’t see the stares and people pointing at them,’ she said.

‘I can only imagine what impact that would have on their self-esteem.’ 

But Ms Brown heaped praise on her daughters and their willingness to overcome the barriers of their condition. 

Pictured: Arliyah (right) with younger brother Reagan after kick-boxing

Pictured: Arliyah (right) with younger brother Reagan after kick-boxing

‘Arliyah is the most independent, crazy, outgoing child who is as fierce as they come,’ she said.

‘She does kick boxing and absolutely smashes it. She isn’t your typical girl and certainly not the typical vision impaired one.

‘I have learnt over the years I had to let go so she could open her wings – and boy can she fly.’

Ms Brown said picking up kick-boxing was one of the ‘best things’ for Arliyah and Mackenzie has followed suit with mini kick-boxing classes and dancing. 

Ms Brown previously spoke to Daily Mail Australia about being denied parking permits for their children – because they were classed as ‘not disabled enough’. 

Arliyah (pictured right) has picked up kick-boxing, which Ms Brown described as one of the 'best things'

Arliyah (pictured right) has picked up kick-boxing, which Ms Brown described as one of the ‘best things’ 

The Department of Transport considered them able-bodied because they can walk.

Mrs Brown is frustrated that other states – such as New South Wales, Victoria and Tasmania – hand disabled parking permits to the vision impaired.

She argued the condition affects ‘so many’ Queenslanders, and vowed to fight for them.

‘It’s really unfair that other states do allow it and Queensland doesn’t,’ she said.

‘It’s really frustrating that we’re so behind. I will never stop fighting for anything my children need.

‘This impacts so many Queenslanders who are blind or vision impaired and I am fighting for them as much as I am for my girls.’

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