Mitochondrial Disease

Mamamia Team Sunday 17 January 2010 9:48pm

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In three short weeks Savannah will be three years old….

Birthdays are a big deal to us. It’s more than just cake and balloons… it’s a triumph! We are celebrating that we have Savannah in our life for another year.

She has changed our world and opened our eyes.

Savannah has Mitochondrial Disease.

Mitochondrial Disease occurs when the mitochondria inside of cells fail to carry out their primary functions. When they fail entire organs can be damaged or shut down completely. Common symptoms include: muscle weakness and pain, gastro-intestinal disorders, poor growth, cardiac disease, liver disease, respiratory problems, seizures, visual/hearing problems, and much more.

Every 30 minutes a child is born that will develop a Mitochondrial Disease. The emerging consensus is that mitochondrial disease affects at least 1 in 500 children, which makes it as common as childhood cancer.  Though unlike childhood cancer I had not heard of Mitochondrial disease before Savannah’s diagnosis.

I want you to take a moment and imagine your child or someone that you love fighting a life threatening disease. That’s hard enough, right? Now imagine if your loved one was fighting this disease in a period not too long after it was discovered. A time when there is no cure. A time treatments did not exist.  A time when the drugs prescribed are not covered by insurance because they are not yet FDA approved. Yet that is what those affected by mitochondrial disease are facing every day.

Statistically 80% of children diagnosed with mitochondrial disease before the age of 5 years old won’t survive to the age of 20. We have already lost too many precious lives to this devastating disease.

In honor of Savannah’s third birthday, we are asking you to give to our girl and the thousands of other individuals living with Mitochondrial Disease.

Visit our facebook page and if you can donate to our ‘Energy for life Walk’ team.

For further information on Mitochondrial disease please visit the AMDF () and the UMDF