Tuesday, February 9, 2010

Can we talk Mito?

Or are ya'll sick of my mito talk. Are you tired of me telling you how mitochondria dysfunction plays a role in cancer, Alzhiemers, Parkinsons, and aging in general.

Are you tired of me telling you how mito affects Asa's GI system? How his cells not making enough energy as affected Asa's muscles.

Are you tired of the links on the side of this blog that points to just a handful of sweet kids whose lives are changed by mito; causing seizures, autistic features, GI dysmotility, hypotonia, failure to thrive, heart problems, lung problems, repeated infections. Causing kids to need feeding tubes, central lines, ports, catherization, oxygen, trachs. Not to mention the families that haul around feeding pumps, special diets, wheel chairs, braces, and O2.

Can you just close this blog and not think of mito anymore? Or do you wake up thinking about it and go to sleep thinking about it? Do you plan your days, nights, weeks, and months around a schedule of a mito kid? Do you avoid certain places and situations because you know your child will get too stessed and have a mito crash? Are you fearful of every bug and germ because it'll halt all progress that you've made in the last few months?

That is our life. That is the life of many mito families. And that is only the tip of the iceberg. We can't forget or turn our brains off.

I don't want you to pity us. We don't pity ourselves...at least not often. We don't pity each other! We ache for each other. We get angry for each other. But not pity. What can you do for us? How can you show that this touches you and you care about a person or family affected by mito?

I'm so glad you asked!!

There is important legislation that is going before the US Senate (S. 2858) and House (H.R. 3502). Your representatives and senators will be in their home offices next week. Will you visit the UMDF Advocacy site and send an email asking for support of this legislation? The email is already typed. It is all done for you! Just insert your name and Asa's name in the appropriate places. It is that easy! Please help us with this "Call to Action"!

But would you like to do something more fun and exciting than sending an email? Would you like to hang out and meet some of these amazing kids and families? How about a 5K or 1 mile fun run?


The Mito What? 5K is March 27 in Millington! There has already been a great turn out but I know it could be better!!! The organizers for this event are amazing! They have gone above and beyond to make this successful. The shirt and goodie bags are gonna be awesome!! And I guarantee you'll have a great time!!

Our family will be doing the 1 mile fun walk. We are going to wear our Superman shirts to support our SuperBaby! Will you please join us on Asa's Super team?! You won't be sorry, I promise!!! Gracie has already informed us she is going to be first and win a trophy in the walk!! Please check out the Mito What? site and register for the race. Then find your self a Superman shirt and join our team!!

2 comments:

m_clement said...

Thank you Kim! That was an awesome post! Thank you for raising awareness for all of our beautiful blessings! You're the best!

Love,
Meghan

Leylasdad said...

Great post Kim - couldn't have put it better myself - excellent!

Kemal