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Saturday, January 16, 2010

...and so we wait

The beginning of December we finally were given a date where we could have Gavin's blood drawn at CHLA. Luckily, Dr. Lee's wonderful nurse was able to have all the appropriate paperwork already printed up, so it was as easy as a blood draw and signatures. We are having his blood work submitted to the Carver Lab in Iowa. This is such a long waiting game. It will take approximately 7-9 months for the first phase of testing and then another 4-5 for the second Phase (mind you the cost is roughly $1,500.00 - but I will keep that rant for another time *smile*). At that time, they will probably need other family members blood work as well.

I pray and I pray and I pray to have somewhat of an answer by July. I would like to go the LCA Convention in Philadelphia in July with at least a name of a mutation gene (or identifier). I would like his gene to be indentified, so I can focus on the appropriate segments related to his mutation and talk to the researchers about the latest developments in the arena of gene-therapy with that specific gene. I sent an email to the Carver Lab, with hopes there is something that can be done to expedite this. The convention happens every 2 years, and I would hate to miss going this year with no idea of a mutation gene by a few months. grrr.

As a parent, this is the last final piece of the puzzle we have been trying to put together the past year. It may not change what we can do for him now, but it will complete the picture of what he has, although we know the consequence of it. Not only that, but I can be better informed of research that is going on today, specific to that gene. Most of the time I drive myself crazy trying to keep in mind all of the latest and greatest in the arena of gene therapy. This will be a long wait for us, the next 7-9 months, but we have valued the word patience this past year, far more than what we had before.

.... and so we wait.

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