The Hard Reality


Do you know what Mitochondrial Diseases are?
They are diseases that damage the body's ability to turn food and oxygen into energy. Energy production occurs mostly in Mitochondria, organelles found in almost every cell in the human body. When the Mitochondrial are damaged by Mitochondrial Diseases, they produce too little energy to keep cells functioning.Over time, these "starving" cells die. When enough cells in an organ are damaged or dead, the organ stops working properly. If enough organs stop working, the person with the Mitochondrial Disease becomes seriously ill and dies.

 "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. BUT the estimates of the number of people with mitochondrial disease keep increasing as the medical community learns more about this disease. Right now the statistics show Mito is as frequent as all childhood cancers combined and, sadly, just as deadly" 




Mitochondrial Diseases come on a spectrum.
They can be severe,  resulting in death in early childhood. Others grow to adulthood before discovering they have a form of Mito. Currently, a child who is sick enough with a Mitochondrial Disease that he or she is diagnosed before age 5, has about an 80% chance of dying before age 20. We do know that Mitochondrial Diseases tend to be progressive; they get worse as time goes on.

Currently, treatments
remain in the planning stages,
and cures
remain only dreams.

THIS IS OUR REALITY.

Comments

  1. Justin ClaxtonSeptember 24, 2011 at 8:50 PM

    But to you who fear My name, The Sun of Righteousness shall arise with healing in His wings; and you shall go out and grow fat like stall-fed calves.

    Malachi 4:2

    This is our reality.

    ReplyDelete
  2. NavhelowifeSeptember 24, 2011 at 11:04 PM

    Romans 8:38-39
    New International Version (NIV)
    38 For I am convinced that neither death nor life, neither angels nor demons,[a] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

    May the reality of God's love continue to strengthen you and sustain you. May you find peace in the midst of sorrow, and may joy come in unexpected places. Above all, know that God holds her in the palm of God's hand, and His love will never, ever leave her. Just as it will never, ever leave you. Whatever happens, know that God is with you, and I am always here for you. *Love*

    ReplyDelete
  3. Grandma and GrandpaSeptember 25, 2011 at 3:14 PM

    "Surely The Lord's hand is not shortened that it cannot save; nor His ear heavy that it cannot hear." (Is. 59:1)
    "For with God nothing shall be impossible." (Luke 1:37)
    Because many are "praying without ceasing."
    We love you!!!!

    ReplyDelete

Post a Comment

Popular posts from this blog

How Can It BE??

Image
It's been almost a year since I've posted and for some strange reason, I found a few extra minutes in my day( crazy, huh?) and thought I would catch-up the TWO WHOLE people who might still be checking in now and then. On May 11, 2014 our world was changed in the sweetest way with the birth of our granddaughter. And GUESS WHAT?!? All those stupid , ahem , quippy things said by grandparents everywhere, are, in fact, TRUE! She is the sweetest, smartest little treasure EVER and I would definitely have been a grandma first if I knew how amazing this is. (Sorry, kids.) And we have the privilege of having her 1-2 days per week, which makes this MiMi blissfully happy but also a tad busy. She is now 10 months old, and can tell you what an elephant and a lion says. She is determined to grow up as quickly as she possibly can, and plans to start walking yesterday. She is a GO-GETTER and is on the move. Having her weekly is such a precious gift. I love it that my grown kiddo...
Read more

The Blessinngs of the Lord make rich...

Image
 Matching PJs and ready for bed. Aren't they adorable?  My and ALL FOUR of my daughters. My cup really runs over!!  Gianna and Celia. I am glad that we prepared ourselves for CP. She is only hypontic in her neck, but she is spastic in her arms, so she is resourseful and uses her feet to grab toys you hold up for her. She is happy, smiley, and sweet as sugar. I am not upset so understand I am saying this as more matter of fact, but she is like a 6 month old in every way. I pray for her sake that some good therapy and nutrition will help her tremendously. She is definitely on the more severe end of CP. We are not shocked, in fact I really expected this end of the spectrum. Please don't feel "sorry" for us or her. She is a blessing and we are privileged to be called to such a child.  Right after we got back to  the hotel room. Sofia only wants ME or Aria. Or she is crying pretty hysterically. We don't mind- at least I have some one to take turns with if I need ...
Read more

Oh what a difference 24 hours makes.

This morning, the PICU nurse announced that we would be moving to the floor today.  I argued with her. I begged. I offered lunch and dinner for the whole PICU staff if they would keep us just one more night.  You see,I spent last night pressing her morphine button every 30 minutes all night long. The nurse came in every hour. She had to check her THREE IVs. Her chest tube that was draining a tremendous amount of blood. Her pain was hard to manage. Her heart rate elevating was our biggest clue, because she never complained. She had a high level of oxygen needed to keep her stats up.  I liked the comfort of knowing that we had one nurse, right outside the door, whose only job all night long was to monitor Gianna and fix every problem as it arose. The nurse laughed and said, "Don't worry she'll be ready. Oh, and she needs to get up and walk today..." What?!??!? It has been LESS than 24 hours since she had major surgery. And then the flurry started. Xrays were taken. Thre...
Read more