Before my second son was born, my husband and I agreed to name him Red, unless he was born with red hairs. On his birth, he has a full head of white hair and striking blue eyes; we felt excited and relieved. Nurses, including those who weren’t part of our medical team came to see the baby with the white hair. We did not think much of that, as both Gage, our oldest son, and we were born with blonde hair.
In the starting month at home, I noticed three unique things about Redd. Initially, his white hair glows in the sunlight. My mother-in-law called him with a cute nickname as a “unique little fairy.” Secondly, his eyes moved side to side continuously. I joked that he was either watching ghosts or a tennis game. Third, at times his blue eyes turned red in specific lighting. I thought it was just a newborn baby behavior.
One morning, when Redd was two months old, I requested that my husband research how the newborn moves their eyes. My first instinct was about albinism. I had not encountered it previously. As we viewed more content and watched videos, we began to think Redd could have it. I scheduled a visit with our child’s doctor. She was also taken aback and promptly directed us to a geneticist and an ophthalmologist.
After examining Redd, the geneticist said he most likely had OCA1, a widely seen type of albinism. He clarified that albinism is caused by a recessive gene that must be held by both parents. I remembered my grandmother, who had a light complexion and platinum blonde hair. When I inquired if she was an albino, she chuckled and mentioned that doctors had questioned the same thing.
At the eye doctor, we discovered Redd had iris transilluminator, strabismus, and nystagmus. She told us he would likely be legally blind and would not be able to drive. I cried the whole way home.
Redd attracted notice everywhere. People were drawn to his white hairs and often tried to touch. We visited parks at dawn or dusk to avoid the sun.
Later, our fourth son, Rockwell, was also born with albinism as well. We give things that protect from the sun a lot. As time passed, it turned into a regular aspect of life. Redd, age 5, is self-assured and pleased to describe his condition. We educate him and his siblings to be resilient, compassionate, and receptive.
When children are unkind or inquisitive, we view it as an opportunity to teach. The greatest present we provided our children is self-assurance, and perhaps a bit of kung fu as well.
