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Further work edit
I hope that the present state of the article is sufficient to satisfy the deletionists. This exceptional boy and his family have a story to tell that goes beyond his own short life, as they have brought attention to this little-known condition. That attention survives him, and may contribute both to public understanding and further research.
The article is by no means complete; it could use some more work on the description of his fight, his course of treatment, and the attention he brought to this disease. There may well be some formal issues which I have overlooked as well (and nowhere do we even mention "butterfly boy"). But I am moving on to other things. Kablammo (talk) 23:18, 7 April 2018 (UTC)