So for those of you who don't even know what Mitochondrial Disease
is... the very simplest way to describe it is your city trying to
run on one triple A battery.
The body can't not convert food into energy, the mitochondria in
our cells are powerhouses that generate the energy. It
mitochondrial disease these mitochondria are dysfunctional or
simply just don't work.
Most people with Mitochondrial Disease have at least 3 organ
systems affected... This is the first red flag of Mito.
It falls under the umbrella of Muscular Dystrophy. Many adult onset
disease like Alzheimer's is now being linked to Mitochondrial
Reiley has had issues since birth... and as she grows older some of
those issues are getting worse... as with this disease, it is
degenerative... the prognosis - as of right now as there is no
treatment, and obviously no cure, is death. Death usually occurs in
80% of those diagnosed before the age of 5, just before they hit
their adult years.
As you know or may not know many of our friends have lost children
this year already... none of them over the age of 8 years old...
others I know are in their late teens and others diagnosed later in
life are in their early 20's but none of them are doing well and
doing everything to keep up their fight against this disease.
It is truly devastating that we can make a little blue pill for the
penis to stay erect for hours on end, yet we can't even have a
treatment in place of something that kills more children than all
childhood cancers combined.
So there is your little Mito lesson.
Not only does Reiley have a fatty acid oxidation disorder called
SCAD - Short Chain Acyl CoA Dehydrogenase Deficiency, but she has
Mitochondrial Complex issues as well... which is not 'typical' We
know she has II III, low IV and severe psychiatric issues. We need
to get her to a Mito specialist whom is out of state, our medicaid
will not pay for it.
I am sooooo happy to read that your wish was granted and you were
able to get what you needed. I love hearing stories where a family
gets what they are most in need of. Very heart warming to know your
daughter was helped in such a way.