May 19, 2015

Today I donated a boxed kit for kids about the human body to one of my son Theo’s teachers. I had bought it for him at Barnes and Noble a few months ago in the hope that he would have fun learning about how the various systems and organs of the body work. He hasn’t shown a whole lot of interest in it, despite that fact that all the organs are made out of squishy plastic (!), so I gave it to his 4th grade Health class teacher, Mrs. Zamora, who was happy to be able to use it with her class who are now learning about body systems. A couple of weeks ago, she had Theo and his classmates choose a body system to study, research the system and write about using the iBook program on their Macs. This is the final school project of the 4th grade and, although the project is a relatively fun one, Theo has quite honestly been more interested in figuring out all the cool things he can do with the Mac programs than figuring out how his body system works.

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But hopefully he has learned something biological along the way. He opted for the nervous system, which I think was an excellent choice since it is one that he needs to learn about in order to understand the family condition that affects his father, David. David has a degenerative neurological condition called adrenomyelonuropathy, or AMN, for short. In this condition the myelin sheath that coats the nerves affecting the legs is damaged, causing difficulty walking that increases over time. David has had symptoms for over 20 years and is now using a cane. Eventually, probably in a few years’ time, he will have to transition to a wheelchair. He has known this was coming, as his mother had it and her father before her, but it doesn’t make it any easier dealing with his disability, as it impacts his life every day in a range of different ways. There are small mercies to be thankful for though. His type of AMN is not the type that affects the brain, so it will be limited to his legs. Also, due to the pattern of inheritance (it’s X-linked, so is caused by altered or missing genes on the X chromosome, of which males only have one), it mostly affects men, and a man cannot pass the condition on to his son. This means Theo will be spared. (If we had a daughter, she would carry the gene and likely develop the condition.)

We are not expecting Theo to understand this much neurology in 4th grade. Goodness knows, it’s hard for us to wrap our heads around it! But at least he’s getting an introduction to what the nerves are and how they work. Which reminds me, I’d better get off my computer and make sure Theo gets back to work on that health project of his!

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