Saturday, January 29, 2011

{We Can Make A Difference Weekends: United Mitochondrial Disease Foundation & Energy For Life Walk}


To read more about the UMDF, check out our Pay It Forward With Us link above.

This organization always hits close to home, but maybe a little more acutely right now than usual.  We have had a hard few months in the Mito world….we have lost far too many precious children, and are witnessing the epic battles of far too many more that are, quite literally, fighting for their lives right now.  Thanks to medical science, the doctors have the means to help them fight, but not on the level of where the problem really lies.  They cannot help the mitochondria work more effectively, we just simply don’t know how to yet.

I am asked regularly to share what Mitochondrial Disease is….and I have a pat answer….We have mitochondria in all the cells of our body, except for our red blood cells.  The mitochondria take the food we eat and the oxygen we breathe, and convert them into a chemical (ATP) that can be used by the cells for energy.  When the mitochondria  are not working correctly, not enough energy is able to be produced and this results in organ systems not able to function the way they are supposed to, even potentially failing all together.  It’s simple, gets the job done, and isn’t emotionally charged.  I think for most, it’s how they want to hear about it, and I am okay with that.  At least they know what mitochondria do now.

A friend recently shared that her daughter’s science teacher was talking about mitochondria in class one day, from the perspective of it being a way to trace human remains back through the maternal line.  When her daughter mentioned that there is also mitochondrial disease, the teacher denied it and refused to believe it was possible.

Within the medical world, it’s gaining acknowledgment, but we still have a very long way to go before the medical establishment in general really “gets” this disease.  There are more misconceptions out there than factual information, and this affects care for so many.  It cannot be put into a box like most diseases and this just doesn’t work well within the system that we currently have.  It’s getting better, it’s just not there yet.

It’s difficult to comprehend, but this disease really has no medicinal treatment, much less a cure.  There is no medication that is targeted at the root of the problem, just medications to try and control the after affects.  There are medicines and supplements that are thought to help facilitate the functioning of the mitochondria, but they are mostly unproven and only sometimes seem to make any notable difference.  We play a game of trying to catch the organ systems that are struggling so we can put band-aids on them.  And then we pray…..pray that we caught it early enough, pray that the treatments we choose will do more good than harm, pray that no other organ systems will get so stressed that they start to struggle, and pray for relief.  For a pause in the action.  For some time for them to recover, even just a little, before the next thing hits.  And we watch….constantly….for any small signs of impending trouble.  And then we either pat ourselves on the back when we catch a subtle hint of something and find the reason, or we struggle with coming to terms with having missed those subtle signs and catching something late.  And sometimes, well, sometimes none of it makes any difference.  Sometimes things go south with no warning at all, and there really isn’t much you can do.  We NEED treatments.

Treatments = Hope.  Treatments mean the possibility of having the time to wait for the cures.

All this means, research has to be funded and ongoing.  Without research there is nothing…no treatments, no cures….no HOPE.  At least not on the medicine side of things.  We will ALWAYS have hope….but we need the tangible parts too.  We need the weapons to fight this thing with.

As we watch so many around us grieving the loss of their child, or in the hospital & at home fighting for every moment, we ask you to consider supporting the UMDF and their mission.  You can either donate directly to the Foundation, or support our friends in Houston during the Energy for Life Walkathon coming up next Saturday, February 5th.
 We thank you for joining us in this worthy cause!!!

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