Logen is DESPERATE for your prayers. Pray blog family, PLEASE pray. Just grab this code and add it to your blog (html gadget) so you can help us spread the word! Thanks! Pray for Logen

A sincere THANK YOU to all of you who have added this to your blog! And, to Anelys for creating such a cute blinkie!!

Wednesday, September 23, 2009

Mitochondrial Disease

Ok... We got some of the results from Atlanta back this week!

It's very complex. I'm in the midst of doing a million things & can't quite explain it all now.

Logen has a Mitochondrial Disease. He also has type 2 muscle fiber atrophy. He will start a mitochondrial "cocktail" as soon as we can find a pharamacy to compound it. There are some financial concerns, the docs say we will have to fight insurance (the doc's office is very willing to write them a letter and do what they can though) and medicaid won't cover this. As far as a specific Mito Disease, we are still waiting on all of those to come in. It could be many months. And, we may never know from what they said. We just know his mitochondria do not function normally. He's "highly probable" to have complex 1 and complex 3- and that's about as much info as we have. It could take nearly 2 years for the meds to kick in b/c they have to get into the muscle. And, there is a chance they won't do anything. As far as prognosis, we don't have one right now.

We are waiting for a big list of precautions from the doc, but were given a few to start with. Things like he can't have a certain type of anesthesia, he can't fast for long periods, no over heating, can't be around people with the flu (b/c it could take him down harder and longer), he may need to be hospitalized for even minor infections b/c of hydration and monitoring.

Please continue to pray for us. Thanks.

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  1. Jess - I'm so relieved you are finally getting some answers but so sorry that they are so overwhelming! Hang in there and take it one day at a time. Please keep us posted.

  2. Jess,
    I lost the link to you blog, and I finally recovered it. I am sorry that I haven't been around. I am glad that you have a dx for Logen, and I too am sorry that it is so overwhelming. I am hoping that you have more answers by now too.

    Praying for you all.



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