Tuesday, October 18, 2011

What is Mito and what does it mean for us???

With our new diagnosis (it is still an unconfirmed diagnosis but all dr's are strongly feeling this is the diagnosis our son will have), we are learning what it is and what it means to us..
When we tell someone Zach has a Mitochodrial disorder, most people have no idea what that means...

and they ask if he will outgrow it?

or if there is treatment?

Sadly, we say NO

There is no treatment...There is no cure

....and we are trying to cope with that.

What is Mito??

"Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function. In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy. When mitochondria are not functioning correctly then the organs in our body begin to suffer"

Mitochondrial Disease is often difficult to explain and understand, theres such a wide spectrum of symptoms and severity.

This is why its so undiagnosed, misdiagnosed and considered "rare" when its really not.

How is it affecting Zach??

Zach suffers from Intestinal failure due to dysmotility and pseudo obstruction, Gastroparesis, EE, Sucrose Iso maltase def, Autonomic dysfunction (temp issues, bradycardia, low b/p, unknown fevers, abmormal sweating, flushing), Raynauds syndrome, Ataxia, Intermittent ptosis, Muscle pain/cramps and Muscle weakness and Fatigue, for now...

He will progress and get worse...

We know, that this may be the best he is..

These may be the best days of his life..

We know this is our life now

Hospital stays, ER trips, surgeries, TPN, line/blood infections, fevers, the bad days, the sleeping all day, the falling down, Dr appts, labs, dressing changes....and so much more

And we know one day
he will have questions....and what do you say?

How do you parent knowing the future you want and dreamed of for your child is not really their future?

You pray, and you turn to God

You teach them and show them LOVE, you give and take and you change because they will change you.

They are not ours to keep.....

but we cherish them while they are in our care.

Mitochondrial disorders are cruel...

Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.

Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease.

80% of children diagnosed before the age of 5 won't survive to be 20.

Right now the statistics show Mito is as frequent as all childhood cancers combined and, sadly, just as deadly


so one way or another whether it happens slowly or quickly... we're forced to watch our children fall apart.
PLEASE help spread

Mitochondrial Disease Awareness.


blog it, share it!


  1. Hi Crystal,

    A precious homeschooling family in SC has a little boy Noah with the same. You might enjoy talking to Kate...www.prayingfornoah.com

  2. Hi Crystal, I met you at Bonnie Kays and met Lucas and Zachary. They are both really cute kids and I sorry you all have to go through this. I wish the best for you and your family. I know that doesn't help but lots of people are concerned and care.

    Marc T.