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I am so very sad and looking for some shoulders
One of the genetic screening tests came up positive. Screening tests can have false positives, though. We found out Monday. They are doing a more involved test to confirm, but it is a storage disorder. It is called MPS disorder. Basically, he lacks an enzyme to expell dead cells from his body. They just continue to build up until they will eventually kill him. It is degenerative, so he will loose motor function and he will loose his cognative function, and basically most children with the severe form do not live past 10 years old, but a lot die much younger than that. I am praying he does not have this, but he has so many of the characteristics and also he LOOKS like the children that have it…. There is a wide range of severity, so some people live a long time, but I am already seeing some degenerative qualities, so I am preparing myself for the worst.
I am pretty numb, and I don’t know what to do. It will be SEVEN weeks before the test comes back to confirm or deny the positive screening. I am going out of my mind……
I am just feeling so helpless and sad
Anne Marie, I am so sorry. I will pray daily for Carter that it’s not MPS, and I will pray for strength and support for you and your family. This is one of those times in life when nothing can comfort you except the love and comfort of God, your family and your friends, and I will pray that you are surrounded by that love and comfort.
Hugs and prayers. Oh Ann Marie. I am so sorry to hear this. I will pray daily for the tests to be negative, and for you and your family in this awful time. I can not imagine what you must be going through. Thank you for all of your support that you have shown to so many of us, and I hope we can be here for you in the same way. If you can, please keep us updated. I wish you and him the best.Thank you Christine and Tracy. I am feeling like I am just going to go out of my mind. Every time I think about it, I cry.
ann marie~ i read your post and almost started crying.. carter is almost exactly shanes age and i can only start to imagine what you are feeling.
BUT i will be praying for your family and carter.. and that God will give you peace and you will trust in His healing Powers.
I hope that it is just a false positive. I will be praying for Carter and your family. I am so sorry
Ann Marie,
I’m so sorry to hear this. I just can’t imagine what you must be going through. I’ll continue to keep Carter in my prayers. I wish it didn’t take so darned long for those genetic tests to come back. 
I pray the results are negative. Hang in there, and please know that I’m here for you if you need to talk. *hugs* Please keep us posted.Oh Ann Marie. Words cannot express the sadness I feel for you and your family. You will be in my thoughts and prayers. Remember we are here for you anytime…
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