Genes are strange and amazing things. Since I majored in Biology, about 15 years ago, and took a genetics class I like to try and convince myself that I understand what the doctors are talking about when they start spurting their information to us about our daughter. Truth is I'm pretty much clueless about the situation. I made a "D" in that genetics class, a hard earned "D" I might add. That was before the CSI series' and all the cool stuff we see done with genetics today. All I really wanted out of the class was the 4 credit hours and an understanding of how you can get different colored Labrador retrievers in the same litter. I got the credit hours and a slight understanding of the dog thing, but I've long since forgotten it.
I think,...no I know, one of the hardest things a parent can hear is a doctor say, "Your child has a rare chromosome disorder and we really don't know much of anything about it. It's simply called 15q24."
It at first sounded to me like something George Lucas would make up for a Star Wars movie. Luke Skywalker, Hans Solo, r2d2, c3po, and 15q24. What in the world was this doctor talking about?! I had no clue whatsoever! Thank goodness we live in the age of information, thank you Google. Can you imagine 20 years ago getting information like that and having no way of finding research yourself!
Sometimes I think we were better off without all our new technology, the search engines, the cloud. But if it wasn't for new technology we wouldn't have our little 15q24. We would simply have a child that we weren't able to understand why she is like she is. But even at that it wouldn't matter I don't think. Unique is always going to be unique. And I for one love uniqueness.
Like the great David Allan Coe said "It Takes all Kinds of People to Make the World Go Round".
I think,...no I know, one of the hardest things a parent can hear is a doctor say, "Your child has a rare chromosome disorder and we really don't know much of anything about it. It's simply called 15q24."
It at first sounded to me like something George Lucas would make up for a Star Wars movie. Luke Skywalker, Hans Solo, r2d2, c3po, and 15q24. What in the world was this doctor talking about?! I had no clue whatsoever! Thank goodness we live in the age of information, thank you Google. Can you imagine 20 years ago getting information like that and having no way of finding research yourself!
Sometimes I think we were better off without all our new technology, the search engines, the cloud. But if it wasn't for new technology we wouldn't have our little 15q24. We would simply have a child that we weren't able to understand why she is like she is. But even at that it wouldn't matter I don't think. Unique is always going to be unique. And I for one love uniqueness.
Like the great David Allan Coe said "It Takes all Kinds of People to Make the World Go Round".
3 comments:
Thanks , Rob, I love your Blog, hope I can figure out how to keep getting it. Gigi
Thanks for writing about this condition. I just started a category on my blog for rare diseases and have posted a woman's story there about her journey/battle with VHL, a rare genetic tumor disorder. She is associated with Inspire - a group dedicated to bringing rare diseases to the forefront and connecting families dealing with the same issues.
Samantha
Our 4 year old son was just diagnosed with 15q24 this fall. In a way it was a relief to have an answer.
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