Strength for the Journey

Relying on God in our strange trip with Mitochondrial Disease

Mito-what?

When we finally received a diagnosis of Mitochondrial Disease after two and a half years of testing and searching for answers, my question was just that: mito-what?

I found a lot of answers here: 

To put it VERY simply, the mitochondrida are what produce energy in 90% of our cells.  When you have Mitochondrial Disease, your mitochondria aren’t working properly.  This link provides a great illustration of the disorder:  Energy Crisis

One problem with identifying a mitochondrial disease is that it affects each person differently.  Some may have exercise intolerance.  Others may develop seizures.  Many times multiple things happen that appear unconnected.

In Erin’s case, these are her primary symptoms:

  • easily fatigued (as an infant she would take forever to feed because she needed so many breaks)
  • severe constipation
  • reflux
  • speech and oral-motor delays
  • autistic behaviors
  • hypotonia (low muscle tone)
  • microcephaly
  • slow growth

What this list can’t tell you is what a delightful little girl she is.  Her smile lights up a room.  Her giggle melts your heart.  When I was researching this diagnosis, what I didn’t find were personal family stories about this condition.  I couldn’t find stories of what to expect or questions to ask.  So I hope that this blog can provide some of that for others who have just received a diagnosis for their child.

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