I just read this article on the Huffington Post and wanted to share it. I think this is one of the reasons I have such a love/hate relationship with fragile x:
If you could somehow erase the condition, would you be left with the same child? And if you could avoid having a child with that condition, would you? Should everyone? Would there be something lost to the world if — many would use the word “when” — we can screen many in advance and reverse others after birth?
Read the entire article: Does Illness Define A Child?
I think this is particularly hard to answer given how many similarities our children share…how many of the “characteristics” of fragile x are the things we love in our kids…their humor, their often (but not always!) sweet temperaments, their ability to surprise us over and over, etc.
Would Monkey be Monkey without fragile X? If I could free him from some of the harder parts would I want to “cure” him entirely, potentially at the risk of losing parts of his personality? I don’t seem to have an answer that doesn’t come with a “but.”
What do you think? (All opinions and experiences are welcome, anonymous comments are enabled if you don’t feel safe sharing.)