The opportunity to go to Puerto Rico has reignited my interest in tracking down family history. This week I attempted to draw my family tree from my great grandfather Jose Hernandez. No wonder when a child is born with albinism, the most common response of the family is, “We don’t have anyone in the family that had albinism….” In just a few short generations I have cousins I never knew about, let alone do they likely know about me.
I don’t know if I’ll be able to meet any distant relatives in Puerto Rico, but I had the idea of making a scrapbook of our part of the family tree to take as a gift. I do want to tell them about HPS, to tell them they might be carriers of this gene. I don’t want to discourage anyone from having children, but should a child be born with albinism, my hope would be it wouldn’t take them 29 years to be diagnosed with HPS as it did for me. Who knows, maybe in a hundred years passing on this sort of information won’t seem as vital because an instant genetic map would be done before you’re ever born. The possible implications of that, both positive and negative, are a whole other blog post!
I worry that my fascination with how this HPS gene has been passed down through the family would make people think I’m only interested in my distant family as potential carriers. It isn’t that. I really do want to know more about family history.
Perhaps because I don’t have children I am even more intrigued with the idea. Someday, somewhere in our family tree, another child will be born that will be like me. I often wonder about who in the family tree before me had HPS. What must their life had been like since no one would have likely understood why they had albinism, or what impact it had on their health? How did they cope with the sun and the glare? Did they have GI issues like I do? How did they cope before such good medications? I feel somehow connected to someone I don’t know in the past, even more so than the average person who sees any other type of genetic features in the mirror every morning.
I don’t know if I’ll be able to meet any distant relatives in Puerto Rico, but I had the idea of making a scrapbook of our part of the family tree to take as a gift. I do want to tell them about HPS, to tell them they might be carriers of this gene. I don’t want to discourage anyone from having children, but should a child be born with albinism, my hope would be it wouldn’t take them 29 years to be diagnosed with HPS as it did for me. Who knows, maybe in a hundred years passing on this sort of information won’t seem as vital because an instant genetic map would be done before you’re ever born. The possible implications of that, both positive and negative, are a whole other blog post!
I worry that my fascination with how this HPS gene has been passed down through the family would make people think I’m only interested in my distant family as potential carriers. It isn’t that. I really do want to know more about family history.
Perhaps because I don’t have children I am even more intrigued with the idea. Someday, somewhere in our family tree, another child will be born that will be like me. I often wonder about who in the family tree before me had HPS. What must their life had been like since no one would have likely understood why they had albinism, or what impact it had on their health? How did they cope with the sun and the glare? Did they have GI issues like I do? How did they cope before such good medications? I feel somehow connected to someone I don’t know in the past, even more so than the average person who sees any other type of genetic features in the mirror every morning.
Comments