Sunday, September 15, 2013

Mitochondrial Disease Awareness Week 2013

It's that time of year again, this week is Mitochondrial Disease Awareness Week. As always, out ultimate goal is to raise awareness and find a cure for Mito. Mito is a terminal illness, and it kills more children then all the childhood cancers combine, yet only a handful of doctors know anything about it. Here in Arizona, there is not a Mito Specialist. Landon see's a geneticists, and he's considered a biochemical geneticists. The hospital where he is seen in Phoenix, is looking to add a Mito Specialist and rumors are there should be one here soon. We are really excited, this could mean a better continuity of care for Landon, and help for so many of our friends that only have a clinical diagnosis.

We consider ourselves incredibly lucky that Landon was caught on the New Born Screen, and also that we know his exact DNA mutations that cause his VLCAD. Most families are still searching for the cause of their child's Mitochondrial Disease. The problem with Mito is that it never presents the same from person to person, and diagnosis to diagnosis. Zebras are considered the 'mascot' for Mitochondrial Disease because no zebra has the same stripe pattern, similar to how Mito presents.

Throughout the week I will share parts of our journey, although most of it can be found on this blog, and facts that are known about Mito. I will also show some videos some friends of ours have made, showcasing Mitochondrial Disease. Landon is in a few of these videos as well.

The video I will start with today, is the latest one that has been done. This video is for 'Run for Kids,' which is for the P.F. Changs Rock n' Roll Marathon in Phoenix this upcoming January. Tgen, who is the leader in finding a cure for Mito and helping families achieve a diagnosis, is an official charity of the race, and they are fabulous friends of ours. Landon's Team Page can be found here ---> Team Landon. Our goal is to raise $1,000 for Tgen. I am planning on running in some manner for Landon, and I find it pretty neat that the race falls on Landon's 5th birthday. It'll be a great way to celebrate with all of his Mito friends.

Here is the video:

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