I often find myself thinking as to why things happen to certain people? What was Gods plan when he made us? The only thing that makes sense to me is that when we ourselves are special that God gives us special little ones to look after. This is by far is the most comforting words anyone has ever said to me.
I know that my family is lucky and Chloe will make it into adulthood & beyond. That she has a good prognosis but along the way she might find obstacles that she may have to overcome. As a parent, I need to do what ever I can to keep her healthy and strong.
What happens to the other children out there whose prognosis is not as good as Chloe’s? How is it fair for one child and not the other? Why must children suffer? It is so hard to wrap my head around this or even begin to understand this disease. So I am on a mission to learn as much as I can about it and at the same time bring awareness to it. Not just for Chloe but the other little ones out there that we have yet to hear about.
If you would like to learn more about these rare diseases please see the links noted below.
http://www.emedicine.com/ped/topic150.htm
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Ivemark%20Syndrome
http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=35690
http://www.emedicine.com/PED/topic2513.htm
http://www.emedicine.com/ped/topic2514.htm
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