When a couple from North Queensland, Australia, fell pregnant at the age of 17, it marked the beginning of their emotional parenting journey, eventually leading them to become advocates for their own, and other children, with albinism.
Hailey and Chayd Brown were high school sweethearts who were really young and in love. In 2012, Hailey had a hunch she might be pregnant, and she was right.
“I remember sitting on the toilet, looking at that stick, thinking, ‘How am I going to tell Chayd?’” Hailey recalled, sharing her story with Love What Matters.
Their doctor confirmed Hailey’s pregnancy. At 12 weeks, the nervous couple broke the news to family and friends and were faced with mixed reactions. “Regardless of their opinions, this baby was ours and we were going to love it and raise it to the best of our ability,” said Hailey. Baby Arliyah came into the world five weeks early on Aug. 27, 2012. Hailey recalled the first rush of motherly love as “indescribable.”
Having both had extremely blond hair as babies, neither Hailey nor Chayd were shocked by Arliyah’s snow-white hair until a few days after her birth, when a nurse approached Hailey in the NICU, as she suspected that the baby girl had albinism.
Albinism, an inherited genetic condition, reduces melanin pigment in the skin, hair, and eyes. It can occur across all racial and ethnic groups, according to the National Organization for Albinism and Hypopigmentation. It is also known that around one in 18,000 to 20,000 people have some form of the condition in the United States.
Albinism can cause severe vision problems and necessitates extra care to protect the skin from direct sunlight.
“I went home that night and told my parents and Chayd what the nurse had said,” Hailey recalled. “[T]hey all went into overdrive Googling.”
Arliyah was then assessed by an ophthalmologist, who “held her tiny eyes open with these metal prongs,” said Hailey. The doctor confirmed that Arliyah was indeed blind and that she was albino. The young mother was really upset and picked her baby up and sobbed.
However, although her husband and father kept researching more about albinism, Hailey was in complete denial.
“I remember thinking that night, ‘It’ll be fine. I’ll just bubblewrap her and keep her by my side forever,’” said Hailey.
It soon transpired that Arliyah could see well enough to navigate the world but was still classified as “legally blind.” However, Hailey struggled with the demands of her daughter’s diagnosis. “There were days where all I did was cry,” she explained. “Then there were days when I would do nothing but laugh and smile from ear to ear because I was blessed with this precious little girl.”
Hailey found support in talking to other parents of children with albinism. Then, when Arliyah was 18 months old, Hailey and Chayd fell pregnant with their second child.
Reagan was born on Aug. 14, 2014. Arliyah and her brother, who does not have albinism, quickly became inseparable.
“Soon enough, we were pregnant with our third child,” Hailey continued. “Because Chayd and I carried the gene for albinism any child we had together would always have a 25 percent chance of having albinism.”
Mackenzie was born on Sept. 10, 2016, with telltale snow-white hair, just like her older sister. Hailey described it as “nowhere near as scary this time around. … She and Arliyah were meant to do this together,” she said.
Life became hectic for the family of five juggling between different therapies for the kids, but regardless, they were all happy. Arliyah needed eye surgery and Reagan speech therapy, but an unexpected hobby imbued the siblings with a brand-new fighting spirit: Muay Thai. Today, Arliyah trains four times a week.
“No one can believe, with her lack of vision, how much of a strong fighter she is,” her proud mom explained. “She is the only known child who is legally blind to do Muay Thai in Australia.”
Mackenzie, on the contrary, is Hailey’s “little princess ballerina girl” and is a lot more anxious over her vision loss compared to her older sister. She even needs more therapy sessions than Arliyah.
Meanwhile, Hailey praises her son, Reagan, for growing up with such amazing acceptance of difference and disability, while also playing a crucial role in the household.
At the time of writing, Reagan, 6, is awaiting an autism diagnosis. Mackenzie, 4, will soon start kindergarten, and Arliyah, 8, is entering the third grade. Hailey shares her daughters’ progress with the world on a dedicated Instagram page, Snow White sisters.
In 2020, Hailey also started her own business, Albinism Warriors, to showcase a collection of the best hats, swimwear, sunglasses, and goggles for children with albinism.
“For us as a family, learning to appreciate life has been the greatest gift of all,” Hailey wrote on Love What Matters. “I know there is no way I would be the person or mother I am today had our journey not been the way it is.”
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