Weve had several people contact us about ways to have Camdens genetic tests covered. The case worker at Dallas was awesome at working with GeneDX and together they found a lab in Harker Heights that Tricare says they will cover the cost and will then ship it to GeneDX. The lady who called from there yesterday told me that even if for some reason Tricare refuses to pay we will have zero costs. That is great news! The test takes 11 weeks and then goes to Dr I and she will contact us once they have reviewed the results. Knowing the cause will help Camdens team of Doctors know better what to expect, what to monitor in cases of the lungs and heart and it is important to know in hopes a gene therapy trial is ever developed down the road. Matt and I will also need to be tested afterwards to see if either of us or our other children could be at risk. What was explained to us is that when the onset of LGMD (Limb Girdle Muscle Dystrophy) is developed during early childhood like Camdens, it is usually in its most severe form. In its most severe form, LGMD2C, the symptoms are usually similar to Duchenne Muscular Dystrophy, with individuals losing the ability to walk between ages 10 and 12. This is one of the types (LGMD2C) we are testing for and they are thinking will come it back as. She assessed Camden again really well at our visit. It was hard to hear her comment on how astounding his shoulder wasting was. No, this is definitely not a good astounding. She also informed us that he does have contractures in both ankles. He has pain in his feet after walking for a bit and this is one of the main reasons. It hurt my soul to hear this, especially since the night splints have been such a struggle and in some way, I feel like I failed him there. Last night was his first night to sleep in them the entire night without waking up, crying and ripping them off! He is doing really well with his cough assist machine and tolerates it extremely well! He still doesnt realize or know he has a disease and that he wont get stronger. We feel the right time and age will present themselves when he needs to know more. As for now, we continue to protect his innocence and let him live a life as normal and carefree as possible! Thank you again for all the prayers. Im not in a place where Im ready to discuss things over the phone or in person but being able to write it out and inform you all is helpful and the best way for me right now. We love you all and ask you to continue to lift up our baby boy!
Posted on: Fri, 22 Aug 2014 14:49:50 +0000
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