‘Whoa! He has a lot of golden hair.’ I HAD NO IDEA. My hubby gave me a warm smile. ‘He’s an albino,’ says the narrator. The best thing she can foster in her two albino sons, according to their mother, is “confidence.”

“We agreed to name our second son Redd before he was born, as long as he didn’t have red hair.” When he came out with a full head of white hair and gorgeous blue eyes, we were delighted (and relieved)! When nurses (who were not our nurses) came in to visit the ‘baby with the white hair,’ we should’ve understood there was something unusual about him. My spouse and I were both ecstatic to be able to brag about him. We were both born with blonde hair (as was my oldest son Gage), so seeing our second baby with blonde hair was nothing out of the ordinary for us.

Courtesy of Patricia Williams

Three things stand out in my mind from the first month we had him at home. His hair was the first. It was so bright white that it glistened in the sunlight. When I told my mother-in-law about it, she just gazed in amazement and said, “He’s like a special little pixie.” The second was the way his eyes were constantly glancing up and tracing back and forth. I tried blocking his view with my hands, hoping that he would look down, but nothing worked. I used to make jokes about him seeing ghosts flying back and forth across our ceiling… My spouse commented that he looked like he was watching a tennis match. Third, his blue eyes would occasionally flare crimson when he was in certain lights. This was by far the strangest occurrence, but I assumed it was because he was a newborn and would grow out of it eventually.

Courtesy of Patricia Williams

My husband and I were eating breakfast when Redd was approximately two months old, and I asked him to Google “tracking of the eyes in infants.” The first thing he discovered was that it was a prevalent feature in albino children. I had never heard the term ‘albinism’ before and was curious about what it signified. ‘White hair, pale skin, tracking of the eyes… and he has albinism!’ I recall him saying to Redd. ‘No, he isn’t!’ was my initial response. They don’t have red eyes, do they?’ We then spent the next few hours studying albinism-related YouTube videos and reading papers to comprehend them better. I called to make an appointment with our paediatrician, still in shock.

‘How could I not catch this!’ she exclaimed when we initially met with her. We discovered that he had refused to open his eyes during his first several meetings, which is understandable given his eyes’ sensitivity to light. As a result, she had never noticed his gaze moving back and forth. She promptly made appointments for us with a geneticist and an optician.

Courtesy of Patricia Williams

When we met with the geneticist, he walked in, took one look at Redd, and declared right away that he had OCA1 (Oculocutaneous Albinism Type 1). He said that there are other types of albinism, but the most prevalent is OCA1, in which the body generates little to no colour in the skin, hair, or eyes. He claims that the easiest way to determine the difference between someone with albinism and someone blonde is to look at their eyelashes and eyebrows. ‘But aren’t they meant to have red eyes?’ I wondered, oblivious to how stupid I sounded. The genetics expert smiled and explained that the only animals with red eyes he knew were rats.

He then explained to us that albinism is a recessive gene and that both my husband and I must be carriers, and he asked whether we had any albino relatives. My grandma, who reared me, was the first person who came to mind. She was half-Native American, having grown up on an Indian reservation. Her entire life, she was fair-skinned, blue-eyed, and had platinum blonde hair. She was about 90 years old at the time. ‘Gram, are you an albino?’ I inquired when I called her. ‘Doctors have been telling me that my whole life, but I’m not!’ she chuckled.

Courtesy of Patricia Williams

Redd’s optometrist confirmed that he had iris transillumination (the reason his eyes would occasionally reflect red in particular light), nystagmus (back and forth tracking of the eyes), and strabismus when I took him in (one look was cross-eyed). When she told me that Redd would most likely be legally blind and unable to obtain a driver’s licence, I was unprepared. I felt like I’d been punched in the gut with a bowling ball. I recall crying out to the parking lot and for the remainder of the drive home.

We quickly discovered how much attention Redd drew when we were out in public during our first year with him. People were stopping us everywhere we went because of his white hair. They’d often ask additional questions or want to touch our son’s hair because he was the first albino they’d ever seen. We went to several beaches and playgrounds at dawn or sundown because of his sensitivity to sunshine so that he could play peacefully. Because we were generally the only ones there, this became enjoyable for us.

Blink Inc Photography

Redd’s optometrist confirmed that he had iris transillumination (the reason his eyes would occasionally reflect red in particular light), nystagmus (back and forth tracking of the eyes), and strabismus when I took him in (one look was cross-eyed). When she told me that Redd would most likely be legally blind and unable to obtain a driver’s licence, I was unprepared. I felt like I’d been punched in the gut with a bowling ball. I recall crying out to the parking lot and for the remainder of the drive home.

We quickly discovered how much attention Redd drew when we were out in public during our first year with him. People were stopping us everywhere we went because of his white hair. They’d often ask additional questions or want to touch our son’s hair because he was the first albino they’d ever seen. We went to several beaches and playgrounds at dawn or sundown because of his sensitivity to sunshine so that he could play peacefully. Because we were generally the only ones there, this became enjoyable for us.

Courtesy of Patricia Williams
Courtesy of Patricia Williams

It took some time for two of our sons to adjust to the needs of albinism (such as stocking up on sunglasses, sunscreen, and hats), but once we got into a pattern, it became a pretty standard part of our lives. Adapting to other people’s reactions and opinions is still a work in progress, and it will most likely be for the rest of our lives. We quickly discovered how much attention Redd drew when we were out in public during our first year with him. People were stopping us everywhere we went because of his white hair. My husband and I devised a ridiculous rule: if a stranger makes more than three comments about our sons’ hair, we will bring up their albinism. Otherwise, I smile and keep a wary eye out if someone tries to touch his hair without his permission.

Photo by Cameron Jordan

At the age of 5, Redd is secure enough to advise others not to touch his hair and explain that he has albinism, which means he has white skin and white hair and is exceptionally sun-sensitive. We want to set a good example for our children by promoting albinism in a positive light and not being embarrassed or ashamed to talk about it. We feel that maintaining a positive, open discourse is essential in teaching kids how to be vocal and advocate for their needs as they navigate school and life.

Photo by Cameron Jordan

If you know anything about my guys, you know they’re rowdy and busy, and Redd is more than capable of keeping up and holding his own. We’ve tried our hardest to raise Redd to be just like any of our other sons (and we’ll do the same with Rockwell), not limiting him in any way or discouraging him from trying new things. I still find myself wanting to pull Redd back or intervene to prevent him from doing anything harmful, but my husband gently reminds me that he’ll be fine… I see his little face, which is full of tenacity and drives… I have to remember to take a step back (within a safe arm’s reach) and let him go for it since he wants to be like his brothers.

Courtesy of Patricia Williams

In my opinion, confidence is the most significant gift any parent can give their children. If you have a child that is different in appearance, has special needs, or just doesn’t fit in with the crowd, it is our responsibility to equip them with the tools they need to cope with the world’s harshness. We’ve already had our fair share of kids being cruel to Redd on the playground, and we expect it to continue throughout his childhood (and possibly adulthood). I remember picking up my oldest from school a few years ago and seeing him unhappy over something. When I asked what was wrong, he explained that several of his classmates had teased Redd about his eyes. I’d already dealt with my version of this with younger children at playgrounds, but seeing my oldest son be affected was terrible. I told him that this would most likely happen to Redd for the rest of his youth and that the majority of the youngsters making these comments had no concept of what albinism was.

Photo by Brandi Welles

We’re doing our best to use these opportunities to teach kids about albinism and explain why Redd’s eyes move back and forth, and his hair is so white.

I’ve always believed that the best defence we can provide for Redd is to teach him how to be self-assured and the appropriate responses to others who make fun of him. My husband has always believed that giving him Kung-Fu classes is the next best defence.”

Photo by Brandi Welles

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