Jaxon was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) 5 days after his second birthday (Feb 2011). His mother told me that Jaxon is the seventh (7th) child in Canada to be diagnosed with this rare disease. I am his great-aunt Louise and I come up with the idea of this blog to keep people informed, and to use my passion for stitching to raise money for the FOP organizations.
Friday, November 8, 2013
Craft fair is over
Hi everyone, well the craft fair is over for another year. We did pretty good, we had sales of $350. We also sold a couple of things ahead of time bringing the grand total to $500 for the day!! But more important, I spoke to a lot of people about this rare disease. They had a lot of good questions - almost always they asked if surgery was a possibility. Unfortunately it is not, the healing process from the surgery would cause more bone growth. People were appalled and saddened that there was such a horrible disease out there. But like everything else, unless we have family or friends with rare diseases, we don't hear about it. Thank you all for your support, love Louise
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Wow! The craft fair was a real success!!! Congratulations :)
ReplyDeleteYou have done a great job of raising awareness of this genetic condition....my wish would be that no child would suffer illness. You are a true inspiration to your stitching sisters. It was a pleasure indeed, to have spent the last year watching you stitch your beautiful creations on young Jaxons behalf.
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