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.

Thursday, June 7, 2012

Halaynas Hope Blog- Mito Kills.

I follow a lot of blogs these days- on a lot of topics.. The ones I follow the closest are the Mito blogs.

These Mito blogs helped me tremendously when we found the depletion on Abby's biopsy. I like so many really had no clue what Mito was, and honestly, I still struggle to try to categorize all the variables.

I know I have said it a hundred times, but we are the lucky ones. Abby doesn't deal with seizures, infections, tubes.. Abby's mind is not affected by Mito. Abby walks, can eat, can hear, can see.

Often because of how well Abby is compared to many other mito patients it is easy to forget that Mito kills. Maybe I purposefully chose not to think about it. I have to admit, when Abby was having such a time of it this winter, the thought crossed my mind that I could lose Abby- and I ran from that thought as quickly as I could. I have absolute faith that Abby can and will live a normal lifespan- and many with Mito do. It is incredibly difficult to read about the loss of children and adults because of Mito, and just as hard to talk about it.

Halaynas Hope blog posted yesterday- 3 mito patients died. It was one of those slap in the face moments. The feelings her post dragged out of me were complex. I immediately felt lucky, then scared, then ached to take away some of the pain these families are suffering- I feel hopeless to do anything.

As we as a community wait for treatments, improvement in therapies, new genetic testing, stem cell replacements,organ transplants, we are losing many along the way. These precious children, teens and adults we lose are our hero's. Through them and their journey medicine has learned more.. their Drs. have learned more about Mito, their families,friends and communities. Through them and their journey's they have given the rest of us a better chance to win and fight this disease process.

My heart and prayers go out to all these families who have lost their loved ones.


Jenna said...

I shared this on facebook yesterday and that is what started the drama with my brother, he downplayed mito because more people die of cancer.
It is such a sad thing, it is sad that such a small community as mito can loose 3 people in one day. That doesn't include the mito patients who are not linked in to the rest of the community, or those who died un diagnosed. I hope for a cure.

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