Will you join in our crusade? Who will be strong and stand with me? Somewhere beyond the barricade is there a world you long to see? Do you hear the people sing? Say, do you hear the distant drums? It is the future that they bring when tomorrow comes!
Brian and I went to see Les Miserables for our anniversary earlier in the month, the above words hit me hard..I put them in the blog and just left them there. This past weekend we were at a family Bat Mitzvah...(Becca did great). I realized just a little bit more that my crusade is: to continue educating, awareness, making sure others don't go thru what we have gone thru to find out what is wrong with their loved ones. We spent sometime with family members we have not seen in a while, until Saturday, it did not hit me...they should be tested as well. Brian and I don't know if our mothers or fathers or both are carriers of the mutation, therefore, not knowing who should be tested...so anyone related to us, should be tested.
Education and awareness, talking about it, being open, answering questions, that is just one way it to bring the barricade down. No longer being undiagnosed means much more then I realized it does. Knowing what is slowly taking our little boy away from us has been answered but now others will also know what it is. Realizing how many more people are potentially affected by this, our families, anyone in our bloodline can get tested to see if they are a carrier of the VRK1 mutation. So, if and when you want to know, please don't hesitate to get in touch with us.
WILL YOU JOIN IN OUR CRUSADE?