Duchenne

I have two main goals of this blog: #1 is pretty simple. I want to keep our family and friends updated about our son, who has Duchenne Muscular Dystrophy.

#2 is to raise awareness of Duchenne. When we were first told at the emergency room about the possibility of Ben having muscular dystrophy, they didn't mention the word "duchenne"; they just said muscular dystrophy. When we got home, around midnight, I googled muscular dystrophy and all kinds of sites came up, but they all talked about varying dystrophies, each with its own set of problems and prognoses. Then I got to one that explained the differences between the 40 different dystrophies, yes FORTY!! There are 9 main ones I guess you could say, but more than 40 all together. The article went on to say that Duchenne is the most common and the most severe. I prayed, Oh Lord, please, if he has to have this, please, don't let it be this one. Well, as you already know, it IS Duchenne.

Everyone needs to know about this horrible disease. It robs our boys of freely running, jumping, climbing trees, riding bikes, and their life. The more people know about it, the more awareness, the more likelihood that there will be a cure in the near future. I want a cure not only for my son, but for other sons as well. For some, it is too late, this disease progresses rapidly. But for others, there is still hope. I believe there is still hope for my son-he has some time on his side...but the effort needs to be NOW.

For those of you who know me in real life, might think I am going a little overboard....but wouldn't you do the same if it was your son?

The Lord is faithful. I will trust Him in whatever comes our way. I am praying that a cure will be found, in time for my son. But if that doesn't happen, i will still trust Him. He has allowed this to happen and I want to glorify him in all that I say and all that I do.

John 9:1-5 says:

1 And as Jesus passed by, he saw a man which was blind from his birth.
2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? 3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him. 4 I must work the works of him that sent me, while it is day: the night cometh, when no man can work. 5 As long as I am in the world, I am the light of the world.