Courage for Corynna

My dear praying friends, I ask that you all lift up Corynna and her family in prayer.



Please bear with me with this scattered post. It is one of those times that I have had trouble putting words to paper (or computer).

Corynna is an amazing teenage girl who is fighting mitochondrial disease. Mitochondrial disease "Mito" is a horrible disease that basically zaps the energy out of every cell in your body leading to cell death and organ failures.  UMDF.org describes it like this:

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

How does mitochondrial disease effect the body? UMDF.org describes it:
The parts of the body that need the most energy, such as the heart, brain, muscles and lungs, are the most affected by mitochondrial disease.  The affected individual may have strokes, seizures, gastro-intestinal problems, (reflux, severe vomiting, constipation, diarrhea), swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease

Corynna struggled with some GI problems and constipation as a toddler, but it did not interfere with her activity or life style. When I met Corynna about 3 years ago, she was on a competitive dance team.  Now her body does not have the energy to walk.  At the time that we "met", Corynna had severe GI issues and constipation landing her in the hospital several, several times...at this time she was not diagnosed with mitochondrial disease. The first time she was hospitalized, she was diagnosed with idiopathic constipation. She has not been able to eat solid food since 2012.  Her intestines failed her first. She had surgeries to remove her gall bladder and place a Malone/ACE (does the same job as a cecostomy). Surgery was extremely hard for her to recover from, and she remained in the hospital longer than typical. The ACE never really worked for her.  Her colon was done.  She had an ileostomy (a bag placed on the outside of the body at the end of the small intestine) placed as well as a G-tube (feeding tube). However, she can not tolerate feeds in to her feeding tube so she has required TPN (feeding directly into her veins so her tummy doesn't have to do anything).Shortly after she began having fainting spells due to drastic and quick changes in her blood sugars and other changes.  Then started the troubles with breathing and neurological issues.  A year ago, Corynna traveled to see one of the best mito doctors in the country and left with a clinical mito diagnosis. She is now in the care of hospice.

Her body can no longer handle her TPN (her nutrition), and they have had to stop it.  They have changed many meds around to keep her comfortable and have changed her IV fluids to include some calories but not near the amount of nutrition that she received from TPN. Things are very hard. Her body is growing weary.

As a dear online friend said it, "In the three years I have known her she went from dance to wheelchair almost overnight."

There is very little known about mito, and it is Corynna's goal to spread awareness of this disease.  It is such a tough disease because as we have learned it is very hard to diagnose and even harder to rule out. Mito presents hundreds of different ways at different ages and has differing levels of severity. There are over 40 types of mitochondrial disease. Mitochondrial disease it genetic.  It is in the DNA. So as Corynna says, "“I have said quite often that my disease is genetic and is in my DNA. God has had this plan for me all along.  This is the life I was meant to live.”

Corynna has taught me so much. Over the past three years, she has helped give me a perspective that Beckett could not yet give me.  Because he wasn't able to express how he felt, I often talked to her about what it was like to have an NG tube, a G tube, an ACE, enemas...And she has given me patient perspective.  She is so wise.  She is truly a special young lady giving support to grown mamas at the young age of 14, 15, & 16. She is known as Dr. C. We all love her and the amazing insight she has given us. Watching her grace is truly humbling.

The county in Ohio that she lives in has declared November 25, Mitochondrial Disease Awareness Day. Please take time to learn more about this disease.  I have read that more children die from mito than all cancers combined. We need to fight for a cure and awareness. It can affect anybody at any age and any organ.

Here are some links, if you would like to learn more about mitochondrial disease or follow Corynna's story:

Courage for Corynna facebook page...this will give you more specifics on exactly what to pray for
https://www.facebook.com/CourgeforCorynna

The Corynna Strawser Research Fund for UMDF
http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.8855871/k.440E/The_Corynna_Strawser_Research_Fund.htm

Article about Corynna
http://www.ehospice.com/usa/Home/tabid/5466/tabid/9364/ArticleId/7624/language/en-GB/Default.aspx

About Mitochondrial Disease- UMDF
http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934627

Video about children affected by Mito made by a dear friend
http://www.youtube.com/watch?v=qyLjocnJ2_4


Dear God,

I lift up sweet Corynna and her amazing parents to you, Lord. I pray that you wrap your mighty arms around this dear family and cover them in peace and comfort.  My heart hurts. Really hurts. But I know that You are good. You are creator. You have known and loved Corynna since before her parents ever even held her, and you continue to love them all with a relentless love. Thank you so much for the cross.  Thank you for the comfort and the hope that we have in you. Thank you for sending Jesus to die for us on the cross so that we can have hope in heaven...hope in eternity with you, God, praising you. Hope of being whole again...no more pain or sorrows. No more tears. Lord, I pray for a miracle for this sweet girl. Please hold her family closely to You.

In Jesus's Name,
Amen

Hear my cry, O God;
listen to my prayer.
From the ends of the eart I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.
For you have been my refuge,
a strong tower against the foe.
Psalm 61:1-3

My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.
Psalm 73:26