1 - In The Beginning

Hmm. Where shall I begin?

     It was the Summer of 78. A beautiful baby girl with light purple eyes and golden strawberry hair was born into a family that highly anticipated her arrival. Yes, you heard me right. Light purple eyes. The hospital believed her eyes were too light for the bright nursery. They worried she might be an albino child. Quite frankly, according to the mother of this beautiful baby girl, the child scared the hell out of all the nurses.

     See, when most of us are born in our family, we have purple eyes, sometimes pale blue, but mostly purple. They turn blue or green within a couple of days, which is what happened to this baby girl. We are fiercely protective of our offspring when they are born though, because hospitals, doctors and specialists seem to want to turn us into guinea pigs or look at us under a microscope any chance they get. This was one of those times.

     Oh right, I bet you're curious what this little baby girl was named! Let's call her Porcelain for privacy reasons, no? Porcelain's skin was so white it was nearly translucent. When the hospital had put warming lights on her (not tanning lights), her skin began to turn red. They were perplexed and amazed by this. They decided it was best to have Porcelain stay in her mother's room and used warming blankets instead, which seemed to work better.

     The family quickly took control of the situation, becoming advocates for Porcelain and her mother. The two were leaving the hospital within days thanks to this and the mother's doctor who proclaimed the baby was healthy and just had very sensitive skin. Over the years Porcelain's hair would become darker but retain some of that red highlight. Her eyes would settle on a yellow-green hue. Some told her she looked as if she had cat-eye coloring.

    While we are really focusing on those eyes... she had central heterochromia in both eyes. Central heterochromia is when there's a shade of gold around the border of the pupil in the center of the iris, and their regular eye color is surrounding it. There's no eye disease that causes this, nor is there any problems with vision. It is however a rare condition. It runs in my family. Every single one of us have a central heterochromia.

     Porcelain led a happy childhood in the shade. She seemed to be fine outdoors but got sunburned pretty quick in the bright sunlight. Her family hoped that just maybe she was sensitive but not allergic to sun, which ran in their genes. One morning Porcelain's mother decided to take her picture as she sat on the stairs leading to their front door. The sun wasn't out at the time. When she was about to take the picture though, the blazing beast shown through the clouds like a million lasers attached to a giant flashlight. Porcelain screamed in pain and blisters appeared on her skin within minutes. That was the end of outdoor playtime during the day unless it was in the evening hours.

     To the doctor's office! Porcelain had indeed inherited the family's 'condition'. The doctor even called it the "vampire disease" because that's what porphyria had always been nicknamed. He proclaimed she had solar urticaria (which at the time was considered part of EPP). Porcelain was only 3 years old, around the time porphyria symptoms usually arise. Her mother knew the road ahead would  be a rocky one.

I'll leave the story there. Till next time my pretties.

Here's a link about Central Heterochromia for your viewing pleasure:
https://www.healthline.com/health/central-heterochromia#types

Here's a link about the first Erythropoietic Protoporphyria (EPP) test done:
https://www.ncbi.nlm.nih.gov/pubmed/13765301