ok heres the deal

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toad_ster

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I was born with a birth deffect called neurofibramatosis. Woah what in the world is that you say? Its quite complicated to explain, I am still learning. here is NF (as it is abbreviated) 101

two kinds

NF 1: if patient has NF, passing it on to the next generation is 50%. Chance of it occuring spontaneous is 1 and 4,000

NF 2: more severe of the two, same as passing it on to next generation...chance of spontaneous is 1 and 40,000.

I have NF 1. Doctors found this out because of several symptoms common to this birth deffect
a) a large head circumference (as a baby it was like in the 98%)
b) what are called cafe au spots...kind of look like birth marks. I have quite a few all over my body.

those two things is what threw caution into the wind.

later on, age 3, I had trouble with speech (another symptom) at that age I only knew 3 sounds in the english language. It took me like 10 years to get out of speech thereapy.

another factor can include, learning disabilites.
and then there are what called neurofibras. I really dont know how to explain what these are. But upon recent research I found out that some patients have thousands of these. But, they are like little knot-like things that can be an outward appearance, or inward.
A few months ago I found several of these...i was a little scared, because I mean I went nearly a quarter of a century without these things, and now they are appearing. I mean will I have a late onset of some of the more severe symptoms of this birth deffect?

the severe are tumors, tumors that can grow on organs of the body, on the brain, on the optic nerve and all that good stuff. I mean, if it happens, I just want to have to strength to have a good attitude. and if these neurofibras start to show up like as an outward appearance...then let me be able to handle that. I mean, my self-esteem is low as it is, I have been teased and laughed at before (when I was going through speech therapy). And I just dont want to go through that again.

One of the user groups that comes out to the camp I used to work at (camp for all) is a family camp in which one of the members has NF. And I have seen several ppl that have these neurofibras on the outside. And i just dont know how they can do it. I mean it has to be painful, my heart totally goes out to them.

So, after all this, what is the prayer request.
well just strength, I mean I dont care if this manifests any further--if that is Gods will. But if that is the case then I want to be strong, and not lose focus.
 

aggie03

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You have to keep one thing in mind constantly, your citizenship is not of this world.

"For many walk, of whom I often told you, and now tell you even weeping, that they are enemies of the cross of Christ, whose end is destruction, whose god is their appetite, and whose glory is in their shame, who set their minds on earthly things. For our citizenship is in heaven, from which also we eagerly wait for a Savior, the Lord Jesus Christ; who will transform the body of our humble state into conformity with the body of His glory, by the exertion of the power that He has even to subject all things to Himself."

-- Philippians 3:18-24

This passage should give you hope. If you keep your mind on heaven, where it should be, and you eagerly await for the time when you will meet your savior, all of the things that you have gone through in this life will be of no consequence. How can I say that? I don't, Christ does. He will not force you to bear something which you cannot bear, not allow you to be tempted beyond what you withstand.

There are basically two options that we have in this life according to what Paul has written in those verse: either we are for Christ or we are against Him.

If we are for Christ then we live for Him, we are obedient to His will and His commands. Don't give up on where you have your hope - for as a Christian your hope should always come from the knowledge you have of Christ Jesus. If you let your hope fade because of the trials you face in this world, then you will have nothing once you leave this world. Nothing is worth losing that focus, that hope. Be strong, mentally and spiritually when your physical health begins to fail. Read your Bible, learn where your hope comes from. Seek the truth always through the word of God.

If you have been baptized into Christ for the remission of your sins, repented from your sins and confessed Christ Jesus as your savior then there is nothing that can take away your hope as long as you maintain that hope. My prayers will be with you constantly, consistently.
 
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Auntie

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Praying for you toad_ster :pray:

Hey toad_ster, do you know what a joy you are?  I mean it seems like you already have what you are praying for, but I will certainly pray for you, and I will thank God for you, because you are a blessing from God!  You have a wonderful attitude, and a beautiful spirit and a great personality!  I only wish I could say the same for myself!  Just take it one day at a time, and you will do great, I just know it.:hug:  God has already given you an extra dose of His Strength, I think you just don't know it.  But you've got it, cause it shines thru in your posts!

Yeah, the world can be cruel, and that's painful, but just remember this: God thinks you are super special, and so do I.  God loves you bunches! :hug:  I'll pray that God gives you a booster shot of His Strength and Healing Power!

To get you started, here are some blessings so you can buy some armor! :clap:   
 
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ZiSunka

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There is a great pastor that has NF in the US NW area. I wish I could remember his name, because he would be great for you to get into contact with. He was featured on CBS Sunday Morning about 10 years ago as a great example of faith in God and love. Can you imagine! CBS even thought enough of him to do a feature on his faith in God!

I'm going to rack my brain and try to remember his name!!

Also, I'm praying for you!
 
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Auntie

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Hello Mathew!:wave:

I didn't ask the question, but I like to know the person's first name for whom I'm praying.:)

I pray for y'all before I go to sleep at night, and sometimes I wonder what God thinks about all these user names! :D   I think he gets a good laugh.  I really wish I knew Dewjunkies real name.:)

Dear Jesus, please bless toad_ster and dewjunkie.:hug:  
 
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debs

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Sorry I took so long to get back here Mathew (like someone else said, I like to pray using real names)
Father I thankyou for the life of Mathew. I thankyou that he is a mighty witness for you in this life and I ask Lord that you would continually lead him where you desire him to be. Lord I ask that u would increase your anointing upon his life, Lord that your pure living water would flow from his life to the needs of those u place around him.
Mathew, theres a scripture that is something like " He will keep in perfect peace those who mind are stayed upon Him"
Thankyou Lord for the mighty working of your Spirit in our lives and in Mathews life and that even your Spirit would bring life to our mortal bodies. Lord in Jesus name I command this dis-ease to halt as you Father call the seas to halt, so also this disease.
I speak to Mathews body now in Jesus name I speak health, prosperity and perfect function to every cell, muscle, ligament, joint, tendon. Praise God
Lord Jesus I thankyou for your gift of peace "My peace I give to you, my peace I leave with you..."
amen and amen
 
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