Parents always want the best for their children, no matter how ᴅɪꜰꜰɪᴄᴜʟt that may be. But when Hailey and Chayd Brown had their first daughter, they didn’t think that the challenges would be for a lifetime. Hailey and Chayd were high school sweethearts who welcomed their firstʙᴏʀɴ at the age of 17. Although young, the couple received support from their families and worked on financing their family.
On August 27, 2012, Hailey ɢᴀᴠᴇ ʙɪʀtʜ ᴀt 35 ᴡᴇᴇᴋs ᴘʀᴇɢɴᴀɴt. Naturally, her daughter had to be cared for in tʜᴇ Nᴇᴏɴᴀtᴀʟ Iɴtᴇɴsɪᴠᴇ Cᴀʀᴇ Uɴɪt (N.I.C.U) because of ᴘʀᴇᴍᴀtᴜʀᴇ ʙɪʀtʜ. As soon as Hailey saw her child, she noticed Arliyah’s light hair. She shared: “Chayd and I had super blonde hair as young kids so it wasn’t a shock for me to see how wʜɪte Arliya’s hair was.” But it turned out that Arliyah’s wʜɪte locks were more than just a resemblance to her parents’ hair. She had Aʟʙɪɴɪsᴍ ᴀɴᴅ ɪᴍᴘᴀɪʀᴇᴅ ᴠɪsɪᴏɴ tʜᴀt ᴄʟᴀssɪꜰɪᴇᴅ ʜᴇʀ ᴀs ʟᴇɢᴀʟʟʏ ʙʟɪɴᴅ. In addition, she was sᴇɴsɪtɪᴠᴇ tᴏ ʟɪɢʜt.
The first 12 months were the hardest for Hailey. She wanted to keep her daughter by her side every hour and refused help from others. She admitted: “I pretty much stᴏᴘᴘᴇᴅ ᴀʟʟ ᴄᴏɴtᴀᴄt with the outside world, lost many friendships, and ᴀɴɴᴏʏᴇᴅ a lot of my family.” She was also quite in denial of her daughter’s condition and always ꜰᴇʟt tᴇʀʀɪʙʟᴇ when someone commented on Arliyah. At times, Hailey would be in tᴇᴀʀs because of the world that sees her daughter as ᴅɪꜰꜰᴇʀᴇɴt. One day, her father ʜɪt her with the truth and said: “Hailey, she is ɢᴏɪɴɢ tᴏ ʜᴀᴠᴇ tʜɪs ꜰᴏʀ tʜᴇ ʀᴇst ᴏꜰ ʜᴇʀ ʟɪꜰᴇ. You have to find a way to accept it and deal with the comments.”
Slowly, Hailey began to accept her daughter’s condition and reached out to other families who had the same experience with Aʟʙɪɴɪsᴍ ᴀɴᴅ ᴠɪsᴜᴀʟ ɪᴍᴘᴀɪʀᴍᴇɴt. Hearing stories of others gave Hailey much hope for her daughter, and soon she began ɢᴏɪɴɢ tᴏ tʜᴇʀᴀᴘʏ with Arliyah. Despite her ᴅɪsᴀʙɪʟɪtʏ, Arliyah grew up to be a strong and ᴀᴅᴠᴇɴtᴜʀᴏᴜs ɢɪʀʟ. She fell in love with Muay Thai and did well in the sport despite her ᴠɪsᴜᴀʟ ɪᴍᴘᴀɪʀᴍᴇɴt. Going to school was also a challenge she learned to overcome, but what brought her most joy was having siblings to navigate life with.
She continued to share: “When Arliyah was 18 months old, th fell ᴘʀᴇɢɴᴀɴt with our second child. All throughout the ᴘʀᴇɢɴᴀɴᴄʏ, I knew he wasn’t going to have ᴀʟʙɪɴɪsᴍ. I know it sounds weird but I just had this strong feeling, and I was right. Our son was ʙᴏʀɴ on August 14, 2014, weighing 7.25 pounds. When he came out, I remember looking at his hair and knowing straight away he didn’t have ᴀʟʙɪɴɪsᴍ. After our wedding that year in May, we moved into our very first home at 19 years old as a family of four, bringing Reagan home a couple of days after he was ʙᴏʀɴ. Life was hectic with two kids. Arliyah was an incredibly active toddler who had the most adventurous, outgoing personality and never took no for an answer. She made her own path very young and that path would lead her to where she is today.
Reagan was a relatively easy baby and the two quickly became inseparable. Life moved pretty quickly with all the appointments and tʜᴇʀᴀᴘɪᴇs Arliyah had. We soon realized the older she got, she actually did have some amount of vision. She was still classified as ʟᴇɢᴀʟʟʏ ʙʟɪɴᴅ but she could see enough to get around pretty well. I had always wanted a big family and after two kids, I wasn’t done. Soon enough, we were ᴘʀᴇɢɴᴀɴt with our third child. Because Chayd and I ᴄᴀʀʀɪᴇᴅ tʜᴇ ɢᴇɴᴇ ꜰᴏʀᴀʟʙɪɴɪsᴍ, any child we had together would always have a 25% chance of having ᴀʟʙɪɴɪsᴍ. Throughout the ᴘʀᴇɢɴᴀɴᴄʏ, I knew the baby would have ᴀʟʙɪɴɪsᴍ. I kept saying to myself: “If she does have ᴀʟʙɪɴɪsᴍ, then she and Arliyah were meant to do this together.”
Nine months went by and we now had a 4-year-old and a 2-year-old. Mackenzie was ʙᴏʀɴ on September 10, 2016, weighing 7.75 pounds with, you guessed it, wʜɪte hair! The ɴᴜʀsᴇs were all so smitten with her. After Arliyah, it was nowhere near as scary this time around. Bringing Mackenzie home was incredible, and the kids adored her. Arliyah was on top of the world to have a baby sister with ᴀʟʙɪɴɪsᴍ and Reagan was so excited to be a big brother. Arliyah was always a bull at the gates, going a million miles an hour and always wanting to give everything a try. Nothing was impossible to her and she was willing to prove to anyone she, in fact, could do everything all the other kids did.
After all she confided: “I sometimes do imagine what my life would have been like had the girls not had ᴀʟʙɪɴɪsᴍ. When you have a baby, you never imagine the possibility of there being anything “wrong” with them so when do you receive a ᴅɪᴀɢɴᴏsɪs, you [are] always going to carry that bit of grief for what you’ve lost. 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. I truly am grateful for that because.”