Monday, September 19, 2011

Mitochondrial Awareness Week!

This week is Mitochondrial Awareness Week. In honor of this week, we have a different blogger who will post about their life with Mitochondrial disease on www.miraclesformito.org. I will also share these here.

Here's mine from yesterday:

I have thought a lot about this post and what I want to say....the importance of advocacy, the needs of our children, how I have lost a child to this disease but that it is important to 'carry on'.

Here's the real scoop..... Mitochondrial disease sucks my left toe.

I hate it. I hate that it has taken my daughter. I hate that we fought seizures, muscle weakness, slow gut, urinary tract infections, MRSA, pancreatitis and numerous other problems.

I hate that my husband and I are perfectly healthy but some crazy recessive genetic disorder prevents us from having perfectly healthy children.

And I miss my daughter, Samantha every single minute of my life.

But outside of my grief and anger, I have found an amazing community, a community that has sustained us during and after Samantha's short life. This community has not been easy to find. Mitochondrial disease is horribly under-funded and under-supported in the medical community. It is a disease that is hard to diagnose, difficult to control and there is no cure.

Blech.

But along this fight, I have found doctors who have said "I do not have the answers but I will do what I can to make you daughter live the very best life."

And I have found friends with other mitochondrial children who are grateful to talk the idiosyncrasies of respiratory toileting and rectal valium. And they even have time to laugh about it.

This week is about those friends, the community we have found, the love and the fight for our families. This week is also about spreading the word about this disease, finding help and advocating for our loved ones.
Every day, we will post something new, a different family, a different fight, a different hope.

Welcome to Mitochondrial Awareness Week

Sincerely,

Heather Schichtel

Founder/Director of Miracles for Mito and Samantha's Mom

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