When you are in an advocacy role, you quickly realize that there are awareness days/weeks for every health topic... except our own. We are striving for that as a goal for 2013 and hope to achieve it sooner rather than later.
This week happens to be Patient Safety Awareness Week, which I have to say I find incredibly ironic.
I find it ironic that there are various days and weeks of recognition of patient safety and human rights and promoting life... however, our families continue to fight for the lives of their childIren. Why does it seem that children with hydranencephaly are not eligible for these rights, simply because they are granted a gray cloud upon diagnosis that makes their life less than perfect in the eyes of some.
Medical professionals continue to believe that a terminal prognosis means there is no reason to provide that individual with the best quality of life possible. All of us at Global Hydranencephaly Foundation will continue to fight for that enlightenment wihtin the medical community.
What does this have to do with patient safety awareness week or our weekly Toy-FULL Tuesday series?
Parents must ensure patient safety of their children and not rely solely on those trained "professionals" to ensure safety alone. *sorry for the seemingly aggresive start to this post, some topics just really get me worked up more than others!
A great way to help is with medical id jewelry (bracelets, necklaces, belts, etc), available from a variety of medical supply companies and even customizable by small boutiques (of course we encourage you to find a small boutique to make any purchase = support small business!)
Here are a few places to check out, especially for kids (photos shown are only a sampling of products available by clicking on the website links):
Lauren's Hope: The Original Medical ID that combines Safety with Style
Petite Baubles Boutique