Friday, September 28, 2012

Garrett's Mito DNA Sequencing Happening RIGHT NOW!!!

That's right!! I received a voicemail earlier this week that Garrett's sequencing had to be restarted because there was not enough genetic material in the first blood sample they prepared, but no worries. They went back to the sample and got more genetic material, and while it did slow the process down, we should have results by mid-November! I am thrilled at the news. Best case is we learn that a DISEASE CAUSING, NAMED gene is identified, thus Garrett's chances of getting into EPI 732 drug trial is better. Here is a link to the latest research study withEPI743:

Worst case is there is no abnormality discovered OR that there is one but not on a named place OR that there is a little something off, but the geneticists do not think it is the disease-causing problem.

I am really pretty uneducated about genetics and this particular study, but I know enough to be dangerous AND to know that an identified gene gives our little man a much great chance to get onto a medicine that is stopping and sometimes REVERSING mito in some kiddos.

I will post as soon as I have more info. I posted this earlier this year, but Garrett's mito doctor in Seattle thinks that if Garrett can get onto EPI 743, since he is more mildly affected than kiddos who have been in the end of life mercy trials and seen ENORMOUS results, we may see wonderful things for Garrett on the drug.

Let's just keep praying!!!
Godspeed and thanks to each of you for your care and concern!!

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