WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, July 25, 2017

Charlie Gard

I have followed this case since the beginning.

While I haven't seen it discussed much in the Mito forums, I am fairly certain anyone who has Mito or knows someone with Mito has followed this case as well.

Yesterday the family opted to give up the fight after finding out that the hospital had dragged their feet so long fighting a promising treatment for their son that it was too late to offer the treatment. Had the hospital offered the treatment back in December or January or even as late as April, Charlie might be heading home today instead of facing his final days.

While Abby has a different type of Mitochondrial Depletion then Charlie, I cannot help but to feel incredibly engaged in his story. Fact is, at any point Abby could get an infection, or develop any more common illness and it could send her into the spiral of progression that could leave her fighting like Charlie, it is a fear that that stalks me in my sleep more nights and days then I care to admit. The fear of that fate left us fighting to find a property away from germs and chemicals and people.. that fear drags me into the kitchen to grind grains or make yogurt when I am sick or exhausted.

The only thing worse then the horror of this disease is to find out that Drs. not only feel you are a lost cause, but feel it is better for you and society to murder you.

They felt so strongly about it they stripped Charlie's parents of their parental rights to make sure Charlie dies sooner then later.

These are the horrors that haunt me.

Everyday in America people scurry through the streets to save feral cats. Everyday in America someone joins Peta to prevent a leather shoe from being made. Everyday someone in America will scrap their change from their couch not for their child but for a 7 dollar starbucks coffee. Very few fight for parental rights.

Those behaviors are widely accepted by our society.

Fighting for life which is the only thing that matters is deemed wrong by government and the Medical Professionals.

What type of world do we live in?

How do you go near a hospital and even half believe they will fight for your life? How many people are "terminated" each day because Medical Professionals feel it is better for society?

We fight for feral cats but not for the sacred life of a child, a human who had the misfortune to be born with a terrible disease.

This is why we live far away from the burbs. This is why I distrust "modern" medicine which I used to follow blindly. This is why I am willing to learn to butcher a chicken or kill copperhead snakes..

If this is the world the majority want, I want no part of it.

Charlie is Abby, Charlie is you, Charlie is me.

We live in a world where it is okay to strip the rights of parents to murder/eliminate/terminate sick people.

Charlie and his family fought. They fought hard and in their less then a year fight have brought more awareness to this disease then all of the associations, Drs. and patients combined.

I still have Abby and we live in fear. I have no idea how Charlie's parents will feel as they continue forward, but my heart is with them and Charlie, always.

We need to know "why" so many are getting sick and we need to eliminate the cause.

Before more Medical Professionals get the idea it is just easier to murder then heal.

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