Mitochondrial Awareness Week

It is Mitochondrial Awareness Week and I wanted to post a little about Cara to those who are visiting our blog for the first time:

ImageOur beautiful daughter, Cara Mittneen Williams, was born on August 25, 2010.  We first suspected something wrong when Cara was not able to hold her head up and had a hard time feeding, at just a couple of months old.  She had her first MRI when she was 4 months. The MRI showed significant global brain damage.  Shortly after that, Cara started to develop seizures and was tested for metabolic dysfunction. We were referred to a metabolic doctor and started down a long road of testing.  After over a year, it was discovered that Cara has a disorder of pyruvate metabolism.  Her body is not able to convert carbohydrates and sugar into energy.  This has caused her to have a high acid level in her blood and spinal fluid, low muscle tone, temperature intolerance, a poor swallow and seizures.  She is at a high risk for respiratory problems and complications from being sick, even the common cold. She is not able to sit up or stand unassisted, she isn’t able to speak yet, she eats through a port in her stomach called a g-tube and is on a special diet that allows her to burn fat to get the energy her body needs.

Cara also laughs, gives her mommy attitude, dances when she hears music and makes everyone who sees her fall instantly in love.

Mitochondrial Disease affects people of all ages.  There is very little in the way of treatment and no cure.  The diseases are progressive and while some go on to live relatively long lives, many do not live to see their teenage years.  Please visit http://www.umdf.org or http://www.mitoaction.org for more information.

To learn more about our family’s journey please read through the past posts on this blog.

 

Thank you.

Hope. Energy. Life.

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2 thoughts on “Mitochondrial Awareness Week

  1. I read some of your blogs, and you have an amazing story, and 2 remarkable daughters.( if one child is suffering through a disease so is the whole family, and your oldest daughter seems to be strong and braver than my twin could even be! they sound like amazing children. I have a chronic progressive pain disorder called RSD that I have been battling since I was 17, and I am now 19 and still continuing to fight, and after much effort am now able to walk again 🙂 the way you put into words how hard it is to battle things people don’t even think about in a daily basis really hit home for me, and touched my heart. I am praying for your family, please look up my disease, It is underfunded and overlooked, just like mitochondrial disease. keep on writing, it touches people and families everywhere living with a chronic debilitating disease. ~Lauren, age 19

    • Hi Lauren,

      I read up a little on RSD. I am so sorry you are having to endure this. Just from what you have written above I can tell that you are eloquent, driven and strong. That is amazing that you are walking and keeping such a positive outlook. I will keep you in my thoughts and prayers. Do you blog? You can be such an inspiration to so many young people. Please keep in touch, I would love to hear how you are doing.

      All the best,
      Catherine

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