When a couple from North Queensland, Australia, became pregnant at the age of 17, it was the start of an intense parenting experience that would eventually lead them to become champions for their own and other albinism-affected children.
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.
Baby Arliyah came into the world five weeks early on Aug. 27, 2012. Hailey recalled the first rush of motherly love as “indescribable.”
Hailey and Chayd had both had exceptionally blond hair as newborns, so Arliyah’s snow-white hair didn’t surprise them until a few days after her birth, when a nurse approached Hailey in the NICU, suspecting 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.
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 really𝑢𝑝𝑠𝑒𝑡 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.” Hailey, on the other hand, was struggling with the demands of her daughter’s diagnosis. She stated, “There were days when all I did was cry.” “Then there were days when all I did was grin and smile from ear to ear because I was so fortunate to have this lovely 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.
All throughout the pregnancy, she knew he wasn’t going to have albinism. She knows it sounds weird but she just had this strong feeling, and she was right. Their son was born on August 14, 2014.
“Soon enough, we were pregnant with our third child,” Hailey continued. “Because Chayd and I carried the gene for albinismany child we had together would always have a 25 percent chance of having albinism.”
Nine months went by and we now had a four-year-old and a two-year-old. Mackenzie was born on September 10, 2016, with, you guessed it, white hair!
The nurses were all so smitten with her. After Arliyah, it was nowhere near as scary this time around. For us as a family, learning to appreciate life has been the greatest gift of all.
“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 blindto 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 lauds her son, Reagan, for growing up with such remarkable tolerance for diversity and handicap while yet playing an important part in the family.
“For us as a family, learning to appreciate life has been the greatest gift of all,” Hailey wrote on Social Media. “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.”
