efore having children, the farthest I thought about genetics was assumptions on whose eye color my children would have or whether they would get my nose, or my husbands hands. I thought of the word “hereditary” in relation to characteristics, not in regards to diseases, illnesses and conditions.
But a quick google search after Arlo’s diagnosis of Ocular Albinism at 3 months old led me to the words “x-linked hereditary” — meaning it is most commonly passed from mother to son. I felt a knot forming in my throat as I read that the gene can be passed from generation to generation before it presents itself in a member of a family. It also meant that if I carried the OA gene, there was a 50% chance that any son we had would also have the condition.
I gave him this, I thought my eyes burning with tears. I felt dirty, betrayed by my genetic makeup, angry that this wonky gene had layed quietly inside me and now I had passed it to my son. I was ashamed of it, mostly because I didn’t understand albinism yet. I was so fearful of the unknown.
Six months since his initial diagnosis, my mindset around albinism has changed drastically. I’ve discovered that first and foremost, albinism is nothing to fear. As far as chromosomal abnormalities go, it’s a pretty mild one. It doesn’t effect his life span, his bodily functions (save for his vision to some extent, bit there are a lot of resources to help him there) and it does not cause him pain. Arlo is also fortunate in that he does have some pigmentation, so most people are not even aware that he has it.