Four years ago, I gave birth to my second child via c-section, so when he first emerged into the world I couldn’t see him. But I could hear the laughter of the medical staff resounding in the room. Only when my baby was finally in my arms did I understand the reason for the laughter.
It was wonder.
Usually newborns either have very little hair or a dark mop of it, but Ollie was born with a full head of very fair hair. At the time, my husband and I giddily took this as a sign of our baby’s specialness, nor did we mind the jokes about sexy milkmen that persisted after Ollie’s birth, since both of his parents are brunettes.
Soon other signs of Ollie’s uniqueness arrived, albeit not as cute.
He was never content to lie down examining his surroundings, but always wanted to be held. His eyes often swung from side to side rapidly, as if he was scanning his surroundings for potential dangers.
Then, one mild spring afternoon after we’d briefly enjoyed some sunshine, I saw to my horror that Ollie’s face had bloomed poppy-red. I was appalled by my presumed carelessness. I’d got my baby sunburnt!
Finally, when at three months our son still hadn’t made eye contact with us, we took him to the doctors. The diagnosis was swift and astonishing – Ollie had albinism.
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Albinism? I barely knew the word, let alone that my husband and I had been carriers all along. Albinism is a rare, and often misunderstood, genetic disorder. People with this condition have a lesser amount of the pigment melanin, responsible for the colour in hair and skin (hence Ollie’s sunburn in mild weather), and for the development of vision.
Melanin levels vary among people with albinism. Those with the least amount have snow-white skin and hair, and their vision is usually more impaired. But everyone’s eyes are sensitive to the light, and they have reduced vision acuity and depth perception.