Jenn, I appreciate your kindness and willingness to help raise awareness of hemophilia and to help this particular fundraiser. However, "Victim" is a very poor choice of wording. Nobody is a "victim" of hemophilia. Although the dictionary definition can place it in such a context, it is simply inaccurate. They are affected by a bleeding disorder, however it does not victimize them in any way. I have four children with hemophilia A. My two boys are severe and my youngest has an inhibitor. We infuse the boys at least every other day (prophy) and more as needed. We've spent months at a time in the hospital, as well, but neither our children, nor us, have ever been "victims" of hemophilia. Families are sometimes victims of the U.S. healthcare system. While my family has been blessed with disability coverage, others have been denied. The meds needed for proper care and treatment are outrageously expensive. My point is that simply having the disorder does not make one a victim. An alternative headline (or post title) would be: Halloween Fundraiser to Support Child with Hemophilia.
I want to reiterate my appreciation for your service to the hemophilia community. We need everyone's help in raising awareness and helping the families that are affected more than others. Thank you.
My goal here is not to write a novel. I used the word victim because Cayden didn't ask for hemophilia, plus I’m not much of a writer:)…lol. Cayden is a victim because his childhood is being sacrificed because of the hemophilia disorder and is subjected to hardship (financial, childhood, etc).
Thanks for taking a look at my blog, I did remove the word "victim". I'm trying little by little to make the world happy, but for now I'm failing, please help us support Cayden, he doesn't have the healthcare coverage your family does, purchase anything from Avon Online for your wife or kids maybe for yourself Mark so we can help support Cayden. ENTER CODE "TEAMCAYDEN2011" AT CHECKOUT-Thanks
Jenn, I appreciate your kindness and willingness to help raise awareness of hemophilia and to help this particular fundraiser. However, "Victim" is a very poor choice of wording. Nobody is a "victim" of hemophilia. Although the dictionary definition can place it in such a context, it is simply inaccurate. They are affected by a bleeding disorder, however it does not victimize them in any way. I have four children with hemophilia A. My two boys are severe and my youngest has an inhibitor. We infuse the boys at least every other day (prophy) and more as needed. We've spent months at a time in the hospital, as well, but neither our children, nor us, have ever been "victims" of hemophilia. Families are sometimes victims of the U.S. healthcare system. While my family has been blessed with disability coverage, others have been denied. The meds needed for proper care and treatment are outrageously expensive. My point is that simply having the disorder does not make one a victim. An alternative headline (or post title) would be: Halloween Fundraiser to Support Child with Hemophilia.
ReplyDeleteI want to reiterate my appreciation for your service to the hemophilia community. We need everyone's help in raising awareness and helping the families that are affected more than others. Thank you.
My goal here is not to write a novel. I used the word victim because Cayden didn't ask for hemophilia, plus I’m not much of a writer:)…lol. Cayden is a victim because his childhood is being sacrificed because of the hemophilia disorder and is subjected to hardship (financial, childhood, etc).
ReplyDeleteThanks for taking a look at my blog, I did remove the word "victim". I'm trying little by little to make the world happy, but for now I'm failing, please help us support Cayden, he doesn't have the healthcare coverage your family does, purchase anything from Avon Online for your wife or kids maybe for yourself Mark so we can help support Cayden. ENTER CODE "TEAMCAYDEN2011" AT CHECKOUT-Thanks