Mitochondrial Awareness Week Sept 19-25

This is the letter I sent to some newspapers and stations.

Did you know that each year between 1,000 and 4,000 children in the United States are born with a mitochondrial disease and suffer from severe and devastating symptoms for which there is no cure and no effective treatment? My five year old son John Ryan is one of those children. We received our diagnosis in 2008 after years of testing. John requires medicine for seizures that are still not 100% controlled. He also has a feeding tube and is globally delayed. We follow several specialist on a regular basis and have hours of physical, occupational, and speech therapy each week.


While John's story is amazing within itself that alone is not why I am contacting you. Mitochondrial Disease Awareness week is coming up Sept. 19-25 and I encourage you to help raise awareness for this devastating disease which can lead to muscle weakness, blindness, deafness, even unexplained strokes, seizures, and eventually death. The disease primarily affects children, but adult onset is becoming more and more common.

The National Institutes of Health recently recognized the importance of mitochondrial disease research by considering mitochondrial disease for an NIH Roadmap for Medical Research. We must act to ensure the Roadmap is approved and adequately funded.

While you may not hear about mitochondrial disease on every t.v. station during awareness week it is an important topic that desperately needs more awareness as well as more research. To learn more go to umdf.org. Thank you for your time.


I hope to get some response as I posted it on facebook as well.

Just an Update

I don't have a clever title today. It has been a tough week for John and myself. Finally after a month of phone tag we got a call back from Dr. Little. We still don't have a lot of answers or rather new answers. I have to start checking John's glucose before and after his nighttime feeds. We also started a vitamin D supplement. We will be seeing the kidney dr. monthly. We are also waiting on other results but it could take months.

  John has started his self-injury behaviors again. He has been biting himself to the point he bleeds. We will probably start the sensory diet back up. I need to look at getting/building a wheelchair ramp for John. It is almost impossible to get him up and down the steps.. I will have more to post next month as our schedule increases with dr appointments. I am happy for one month that didn't include travel to a doctor.