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When People Ask How My Son With a Rare Disease Is Doing

“How is he doing?” 

“He is better now, right?” 

“Is he no longer is sick anymore?” 

“All good with him?”

“He seems to be doing so well!”

These are much more loaded questions/comments than they would probably be for a typical child. There are many different ways I have been asked how my son is doing at different points on our journey. In some ways, it is a funny question, because it is not like he has an illness from which he will recover. There is no cure for his genetic disorder. There is no straight, short or easy answer to give.

That answer can also change on a daily or even hourly basis. Most of the time I know that when it is asked, the person is generally wondering how he is doing in the broad sense of the term, but I don’t think

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