‘They used metal spikes to keep her eyes open.’ ‘Your young girl is blind,’ says the narrator. ‘I had to protect her.’: Mom gives birth to two albino children, ‘They were destined to be together.’

“My now-husband, Chayd, and I had just graduated from high school together the year before. We were both young and in love, and we were about to embark on our lives together. For my mother’s birthday in January of 2012, we took a trip to Hamilton Island. It was then that I began to experience strange maternal instincts, like if I was expecting a child. I was late and not feeling well, so the idea had occurred to me. I was afraid as a 17-year-old, so I kept my sentiments to myself until I got a pregnancy test when we got home. I was correct. I was, in fact, expecting a child.

‘How am I going to tell Chayd?’ I remember thinking as I sat on the toilet, staring at that stick. I entered the room and sat down on the bed with the stick. With a smile on his face, he looked at the stick, then at me, and answered, ‘Nah.’ ‘It’s almost certainly a false negative.’ ‘Don’t worry, everything will be alright.’ I informed him that we needed to visit the doctor for a pregnancy test. Because we were so young, all of my advice came from good old Dr. Google, who told me I needed to see a doctor. We went to the doctor right then and there. After witnessing the fast results, we peed on another stick, and the doctor praised us.

Courtesy of Hailey Brown

‘Can you believe the doctor just congratulated two 17-year-olds on becoming pregnant?’ I exclaimed to Chayd when we got back in the car. We were both still in shock and didn’t know what to do next, but we agreed not to tell anyone until we were both ready. We informed family and friends around 12-weeks. Some people were pleased with the news, while others were dissatisfied and upset with us. Regardless of what others thought, this was our baby, and we were going to love and raise it to the best of our abilities. Our pregnancy went according to plan, and Chayd had gotten a full-time job while I worked part-time.

Courtesy of Hailey Brown

Let’s fast forward to August 27, 2012, when I was 35 weeks pregnant. My water broke too soon, and we were on our way to the hospital to give delivery. My parents and brother joined us, and I was ecstatic to have their help. Our baby girl, Arliyah, was delivered 8 hours later at 7:52 a.m., weighing only 4.9 pounds. The level of affection I had for her right away was incredible. ‘I love her, I simply love her so much,’ I sobbed to Chayd as they passed her to me. I cradled her in my arms, admiring her stunning white hair. ‘She’s just like her daddy,’ I thought to myself. Chayd and I used to have very blonde hair as kids, so seeing Arliyah’s hair was no surprise to me. As the doctors and nurses began to examine her, I became concerned that they might have to take her away from me to the NICU. We were allowed to keep her for a few hours before they had to take her away. Seeing them take my baby child away from me was the toughest thing I had to do at the time. I had no idea that was simply the beginning of our adventure.

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Chayd called his family, who lived approximately a four-hour drive away, and they began the journey to us. Meanwhile, I showered, freshened myself, and couldn’t wait to see my kid in the NICU. Chayd aided me in walking down those halls, which I well recall. As I entered the small room, I noticed my precious little baby draped in a little blanket and with tubes in her nose and arms. I ran over to her and took her in my arms, refusing to let her go until the nurses had finished speaking with us about her stint in the NICU.

A few days had passed. Chayd had returned to work, so it was only me and my mother who came and went. I went by myself one morning at about 5 a.m. to be there for her morning meal. Despite her diminutive size, she was doing exceptionally well. As I tried to breastfeed Arliyah, one of the nurses walked in and sat next to me. She inquired if I was familiar with the term albinism. ‘Nope,’ I answered, looking at her. ‘How about albino?’ she inquired. ‘Everyone in high school used to joke that Chayd and I were so fair, we’d produce an albino baby,’ I said jokingly. ‘I think your baby is albino,’ she grabbed my hand and murmured. We want to cover her cot because we believe the lights are bothering her eyes.’ I didn’t put much thought into it. I was fatigued both mentally and physically. That night, I went home and told my parents and Chayd about what the nurse stated about Arliyah. They all went into overdrive googling right away. My baby was fine, and I recall screaming and yelling at them to stop. There was nothing wrong with her, and I didn’t care if she had albinism because she didn’t.

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My mother joined me in the hospital the next day, and we were greeted by the ophthalmologist. I couldn’t be in the room while they used these metal prongs to keep her small eyelids open. From down the corridor, I heard her scream. I walked back into her room and snatched her up when she came to a halt. The way the ophthalmologist looked at me in that split second told me something was amiss. ‘I’m sorry to break it to you, Hailey, but your little girl is blind,’ he added. She’s a true albino. She is unable to go outside in the sunlight. You should contact vision services and possibly relocate to a cooler location.’ Then he walked away. I collapsed to the chair, sobbing and cradling my darling newborn child. My mother consoled me, and I’ll never forget the grief and pain in her eyes on that day. We left the NICU that afternoon knowing very little. We went to Chayd’s office, where I approached him outside and informed him of the situation. He hugged me and softly remarked, ‘She’s not blind.’ I assure you that she will be OK.’

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That night, Chayd and my father went online to learn everything they could about albinism. But I was in denial and all I wanted was for her to come home. They showed me images of other individuals with albinism, and Dad was able to contact a woman who operated the Australian Albinism Fellowship. I didn’t want to talk about it with her or anyone else for that matter. I was confident that no one would notice her albinism. ‘It’ll be alright,’ I recall thinking that night. I’m just going to bubblewrap her and keep her by my side for the rest of my life. I’m going to homeschool her and keep her hidden from the rest of the world.’ It was time for our baby girl to come home 12 days after she was born. Chayd had turned eighteen, and I was two weeks away from turning eighteen. That day, all I did was hold her. My family and friends pleaded with me to see her, but I declined. I didn’t want anyone to be in charge of my child. After all, wasn’t it my responsibility to protect her? When it came to feedings, bathing, and changing Arliyah, I refused aid from my parents and even Chayd. This was something I needed to undertake on my own.

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Arliyah was a difficult child. She sobbed all the time, drank her milk only occasionally, and never slept. Days were long, and nights were much longer. I cut off all communication with the outside world, lost a number of friendships, and irritated a lot of family members. I didn’t want anyone near my innocent little kid. I finally decided it was time to see a friend, and the two of us went shopping for a few hours. I hadn’t told her about Arliyah’s diagnosis since I had kept it a secret from everyone save my family. Arliyah was laying in the pram on her back, with lights over her head that made her eyes pink. ‘Eww, oh my gosh, what’s wrong with her eyes!’ exclaimed one of my friends. My heart started to sink right away. ‘Nothing, it must simply be the lights,’ I hastily answered as I covered the pram. That was the day I learned I was the mother of a child with special needs for the first time. I needed to do everything I could to give her the best shot in life.

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Our pediatrician was exceptional. He admitted us to the hospital for two weeks to monitor Arliyah and figure out what was wrong with her. He also recommended a local ophthalmologist, whom we saw once we were released. The meeting was short and sweet. He didn’t even look her in the eyes before informing me she was albino and that there was nothing we could do about it. He told me about all the things she wouldn’t be able to accomplish in life, handed me some contacts for vision Australia and guide dogs, and we were on our way. After that appointment, I was enraged. How can he tell me what my kid will be able to do in life and what she will not be able to do? I was energized by the prospect of proving him wrong. I’d show him what she was capable of doing in her life.

After that day, I went into overdrive researching, contacting families with albino children, and seeking counseling for her. The first twelve months were a blur. There were days when all I wanted to do was cry and ask myself, “Why me?” ‘What is it about her?’ Then there were days when all I could do was grin and beam from ear to ear because I was so fortunate to have this wonderful little daughter. I hadn’t really accepted her diagnosis at the time. People kept pointing her out to us wherever we went. There were questions about if her hair was natural, who her father was, and how many people wanted to touch and cuddle her. I’d return home sobbing and enraged at the world. ‘Hailey, she’s going to have this for the rest of her life,’ my father said. You must figure out a method to accept it and deal with the criticism.’ He was absolutely correct. I had to come up with a technique to deal with. I quickly realized that holding her close to me was my coping mechanism.

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By far the most beneficial thing we did was talk to other families who had gone through similar experiences. Hearing about how well their children are doing gave me a lot of optimism. One of the mothers I was conversing with gave me the phone number of a wonderful woman who works with guide dogs. I contacted her, and she asked Arliyah and me to attend a camp where we would meet other families with vision-impaired children and learn about how guide dogs could assist us. Arliyah was just over a year old at the time. The camp was quite eye-opening. I encountered some older children with vision issues who were otherwise unremarkable. Seeing how healthy and happy they were made all the difference in the world.

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Chayd and I became pregnant with our second child when Arliyah was 18 months old. I knew he wasn’t going to be albino during the pregnancy. I know that sounds strange, but I had a strong intuition, and it turned out to be correct. Our baby, who weighed 7.25 pounds when he was born, was born on August 14, 2014. I recall staring at his hair when he first came out and recognizing right away that he wasn’t albino. After our May wedding, we moved into our first house as a family of four at the age of 19, bringing Reagan home a few days after he was born. With two children, life was frantic. Arliyah was a hyperactive toddler with an extroverted, adventurous spirit who refused to accept no for an answer. She carved her own road when she was young, and that path led her to where she is now.

Courtesy of Hailey Brown
Courtesy of Hailey Brown

Reagan was an easy baby, and the two became inseparable very fast. With all of Arliyah’s appointments and therapies, life went rapidly. We quickly noticed that as she grew older, she did have some vision. She was still legally blind, but she had enough vision to get around fairly well. I’d always desired a big family, and two kids weren’t enough for me. We were expecting our third child in no time. Because Chayd and I both possessed the albinism gene, any child we had together would have a 25% chance of being albino. I knew the baby would be albino throughout the pregnancy. ‘If she does have albinism, then she and Arliyah were destined to do this together,’ I kept telling myself.

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After 9 months, we had a 4-year-old and a 2-year-old. Mackenzie, who weighed 7.75 pounds and had white hair, was born on September 10, 2016. All of the nurses were enamored with her. This time, it wasn’t nearly as scary as it had been after Arliyah. It was a dream come true to bring Mackenzie home, and the kids adored her. Arliyah was overjoyed to have an albino baby sister, and Reagan was ecstatic to be a big brother. Arliyah was always a raging bull at the gates, going a million miles per hour and eager to do anything. Nothing seemed impossible for her, and she was eager to show everyone that she, too, could do all the other youngsters could.

Vicki Miller Photography

Mackenzie was a fantastic fit with the family. She was the sweetest person I’d ever met. She was certainly the cherry on top. With two children requiring appointments and therapies, life became more frantic, but I managed. Arliyah’s first day of school was approaching quickly. I had been dreading this since the day she was born. I’d been looking into schools since she was two years old because I wanted to make sure the one I picked would be able to accommodate her, and I’d limited it down to two options. Chayd and I chose a school that was all I could have hoped for. They went out of their way to make sure everything was set up and ready for her.

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Meanwhile, Reagan was dealing with a number of issues and required speech therapy, so adding that to the mix was difficult. Arliyah’s first day at school was a difficult one. I sobbed uncontrollably. She, on the other hand, was overjoyed. Everyone was getting their bearings, since educating a pupil with a vision handicap was a completely new experience for them. We had to put in a lot of effort to figure out what she needed and how we could make sure she was learning at the same pace as her peers. Throughout the year, there were numerous ups and downs. Arliyah required eye surgery in order to straighten the twists in her eyes. Unfortunately, it didn’t assist her vision, but it did help her focus a little better. Many people fell, ran into poles, tripped, and lost acquaintances during lunchtime that year. It was a difficult time for her. It took her a while to figure out where she was supposed to be. We were very fortunate to meet some amazing folks along the journey who have now become like family to us.

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I was indeed introduced to a whole new world throughout our journey. Albinism is extremely rare in Australia, with only about 1,000 people diagnosed. I wanted to dispel all of the myths and stereotypes surrounding albinism. You, like most parents, allow your children to try out various sports to see which ones they enjoy the most. Arliyah was not your ordinary little girl, let alone one with eyesight problems. She was never one for dressing up or playing with dolls. We learned about Muay Thai (kickboxing) from a friend, and while my heart sank at the prospect of my lovely girl punching and/or getting punched, I quickly recognised the importance of her learning self-defense and how beneficial that could be. When I told Arliyah about it, she couldn’t contain her joy. This was completely up to her alley, and we were all aware of it.

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Arliyah and Reagan have both developed a passion for Muay Thai. Arliyah works out four times a week, including once a week in a fight class. It has quickly become a passion of hers, and I genuinely believe she would not be the child she is now if it were not for it. My kids have developed a lot of confidence and learned a lot of life skills. Arliyah has a goal, and it wants to compete in the same mainstream battles as everyone else. She’s been in a handful of in-house fights and has performed admirably. No one can believe how strong a fighter she is despite her lack of vision. She is the only known child in Australia who is legally blind and participates in Muay Thai, which I believe says a lot about her. Everyone who meets Arliyah admires her ability to give everything she has, to never take no for an answer, and to never act as if her life is more difficult than anyone else’s.

Courtesy of Hailey Brown

However, in order to get the same results, this girl must work ten times harder than everyone else. Arliyah yells and sobs some days, wishing she could see and that life were a little bit better for her. I’ve sat with Arliyah on numerous occasions and we’ve both grieved as we mourned the loss of her vision.

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Mackenzie isn’t like Arliyah at all. She is my little ballerina princess. She is the loveliest girl you will ever meet and has a great personality. Mackenzie suffers from anxiety as a result of her eyesight loss, therefore she needs more treatments and early intervention than her older sister. Reagan is very important in this family. He acts as a big brother to both daughters, assisting, guiding, and explaining things to them as needed. Seeing Reagan grow up with such a positive attitude toward differences and disabilities is by far the most valuable quality a person can possess. Learning to appreciate life has been the best gift we have received as a family.

Vicki Miller Photography
Courtesy of Hailey Brown

I often wonder what my life would have been like if the girls hadn’t been albino. When you have a kid, you never consider that there could be anything ‘wrong’ with them, so when you get a diagnosis, you’ll always feel a sense of loss for what you’ve lost. I know I would not be the person or mother I am today if our journey had not taken the path it has. I am truly grateful for that because it has allowed me to see a world I otherwise would not have known existed. Overall, the girls are healthy and content, and I could not ask for more.

Vicki Miller Photography

Reagan is awaiting an autistic diagnosis, Mackenzie will begin kindergarten next year, and Arliyah will be entering grade three. Our trip isn’t ended yet. I’m sure there will still be a lot of potholes along the route. I never saw myself as a mother of children with special needs, whose life revolved around therapies and consultations with specialists. That, I suppose, is the crazy thing about life. You never know what to expect, so you must simply roll with the punches. If I had one piece of advice to provide, it would be that knowledge is power. “Keep it in mind.”

Vicki Miller Photography

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