I’ve never kept the details of my Charcot Marie Tooth disease a secret from my girls. With each having a 50/50 chance of having it themselves, it wouldn’t be fair to them not to talk about it. I want them to be as informed as possible should they ever show symptoms.
There is a way we could tell if they have CMT now. We could get them genetic testing. But when I had mine done a few years ago, I got a bill for $15,000. I called the insurance company as soon as I opened the envelope to tell them they must have made a mistake and put one too many zero’s in there. She laughed and informed me that there were two tests they had to run, each for $7,500. So two children, at $15,000 each would be $30,000. And really, the money isn’t so much of an issue. It has always come down to this. Would my husband and I love them or treat them any differently if we knew they had it? Absolutely not. So we’re fine with not knowing.
When my 8-year-old was sitting with me this morning playing with her Barbie doll, she said “Hey look Mom – Barbie has CMT just like you!” and pointed to her feet. I have VERY high arches, a result of the disease. I had to laugh. Back when I was her age our Barbie’s had even higher arches than her Barbie does. But she’s so right. Barbie does kind of look like she has CMT. I just wish I could get all of the custom-made shoes that Barbie has!
Side note: Back when I started this blog and I was making the labels/categories for the posts I refrained from making a “CMT Goodness” label. Because really, how could an incurable, disabling disease be considered good. But as I think I’ve mentioned before – I’m a half-glass-full kinda girl. I can find something good in just about everything. And I do believe there are good things that have come from my having CMT. One day I promise to post a list. And as of today, I’m adding a new category to the blog – CMT Goodness. 🙂