Treatment issues should be discussed with your doctor and not based on our experiences with Rhys!

This series of pages were written for those who have family members afflicted with mitochondrial disease. The sole purpose is to offer hope to those when the cards are down. All of us take the "roller coaster rides of our life" when dealing with these diseases, and to help our family deal with things, I've decided to share our experiences with you. This is in an effort to show you that all of us have something in common, and all of us should be strong, take one day at a time, and hope for the best.

Every person who has mitochondrial disease has different symptoms and problems. How we cope with them as caregivers, siblings, parents, and other relatives and friends, with all the stresses involved is crucial. It has been said that nearly 1 baby born out of every 4000 is affected by mitochondrial disease. Though there are "well-known" types of mitochondrial disease, many patients are "suspected" of having disease, and many are diagnosed with variations of disorders dealing with defects in mitochondrial metabolism.

One of the most important things we can do, is to educate those involved in caring for these patients, and make everyone more aware of this common disease that no one knows about. We must unite, be vocal, and get the ball rolling for research and collaborative studies. Were you aware mitochondrial disease is one of the 40 diseases that the MDA funds? I wasn't, and never considered this as Rhys has Mitochondrial Myopathy and not Muscular Dystrophy (anybody for M&M's?). Kudos also are deserved by Kathy Ireland who donated her winnings from Celebrity Wheel of Fortune to the United Mitochondrial Disease Foundation (UMDF). I am not directly involved with the UMDF (an organization that I just learned about in January of 1997), but am a "member" and strongly urge that you contact them about joining. The more we unite, the better off the next patient diagnosed with mitochondrial disease will be. See also two other useful sites on the Mitochondrial Links page.

So now let me introduce you to Rhys.