Today what I though about was... I'm the third child in my family. In order to get Nethertonsyndrome, both parents have to have the carriers. The parents usually wouldn't know that they have the gene because it is so rare and it's a recessive gene. Because it's a recessive gene, when both parents have it, there is only a 25 percent chance of getting it. So the good news for me is that if I marry a man without the recessive gene then my children will not have it. And the chances of that are pretty high. I know a girl with Nethertons who had a baby without Nethertons, so that gave me hope.
But what I really wanted to say is.. I've been thinking about my mom's situation. I was the third child and I had Nethertons. Doctors didn't know what was wrong with me. They just said I had sensitive skin. But I obviously had problems. I was super super red and had several allergies. I had to be fed with a tube through my nose and drank a lot more than the average baby. Then my mom had another child 18 months after me and that child too had Nethertons and was submitted into a hospital right away and my poor mom didn't even get to be with her baby for several days. That is I think when we were diagnosed with it. I can imagine it would have been hard to make a decision to have more children after two in a row. But I'm grateful she had six more (and the were none of them had it). I'm grateful for my life and for all of the rest of my siblings. It's worth it.
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