Mitochondrial Disease Awareness Week

Welcome to Terra Talking – Mito Awareness Week Version!

In case you didn’t know – our youngest daughter Kendall Quinn battles a disease known as Mitochondrial Myopathy, or, as we call it around here “Mito” (my-toe).

Over this next week, September 18-24, I will be blogging a little bit about what mitochondrial disease is, how it affects Kendall’s life and the lives of our family on a daily basis, and having a few guests pop in to share their experiences with mito. Mito is an absolutely horrible disease, affecting just as many kids as all the pediatric cancers combined – and yet so very little is known about it. We have no special hospitals, no special bead program to commemorate our children’s bravery, and very few doctors and medical professionals who even know how to properly care for it. Awareness is HUGELY important. We lose far too many mito angels every month – it’s time to start standing up to this disease and fighting back with all that we can. The more aware we can make more people about this disease, the more chances for funding, research, and hopefully eventually a CURE we all have.

I hope you’ll take the time to read through the information as I post it this week, and visit the links of other people doing their best to help raise awareness of Mito.

If you are on Facebook – here’s one quick and easy way to start being a part of the search for a cure:

One of our mito friends, Grant, has a sister who decided to start DOING something. She started a facebook page simply for her friends and family, and hopefully a lot of OTHER people, to start getting information about what Mito is and means and how they can help. Her goal was to have 10,000 likes on the page in a week. While it didn’t quite happen in a week, she is getting very near to her original goal. It is my hope that some of our awesome Terra Talking readers will click on over and “like” her page. Do it for Kendall, and for Grant, and for the many hundreds of other kids courageously fighting this battle every day.

 

I would also be absolutely honored if we could spread the word via this blog! Every time you click on one of the social media icons at the bottom of each post (facebook, twitter, stumbleupon, etc.) – you are sharing this blog, and thereby this information on Mito – with all of your friends. Who will hopefully then share it with all of their friends. This little piece of the internet has had over 67000 visitors to it in the past couple years. That is awesomely humbling – I am so grateful for every single one of you! This is a HUGE goal – but I would love to hit 100,000 visitors, in honor of Kendall Quinn and her brave fight every day, and in honor of so many other little mito warriors who inspire me to be a better person every day. Please send this link, or the link to a blog post, to your facebook page, or tweet it, or email it to your friends and family this week. The more people who know about mito, or even just hear about it, the better chance we have at raising awareness!

From the bottom of our hearts – we thank you!

Ben, Terra, and the four K’s