Until Jude was about 15 months old, our days included constant researching, pursuing diagnosis, cleaning vomit, washing sheets and clothes, doing therapy, going to appointments, and trying to take care of a sick baby and a very active 2 year old. Our sleepless nights involved overnight feedings and refills administered through a permanent g-tube, more vomit, and dream after terrible dream. His GI system was just broken.

Milestones excited us because for a long time, he didn't eat, couldn't hold up his head, and didn't follow objects. He only cried when his stomach was bloated (decompression with the G-Tube immediately stopped him from crying because it released the air that he couldn't), often vomited (I believe because of slow motility, bloating, and an exaggerated gag reflex), and had abnormally enlarging head size (which decreased with time). When he was small, his MRI showed decreased white brain matter, and his EMG revealed his short muscle fibers.

We received a diagnosis after a muscle biopsy around 18 months old, and we couldn't believe what we heard. Jude had mitochondrial myopathy. We sought other opinions, and every specialist agreed that the diagnosis was accurate. Ever since that day, Jude has only improved. His specialist put him on a high calorie, very specific diet. Eventually, he gained enough weight and his symptoms decreased. His doctor removed his g-tube right after his 6th birthday.

Now Jude is in a normal classroom. He's bigger and better than ever. He still has a few limitations, but he has come so far! Problems in infancy and early toddlerhood were life-threatening. If you just received a death sentence, Jude is your icon of hope. He is doing an amazing job of defying his limitations! Best advice? "Expect the worst and hope for the best." Things are definitely going to go wrong, and your child is going to suffer for it. It's your job to help him (or her) pull through the crashes.

I like to compare Jude's mitochondria to the levees of New Orleans. The levees did a pretty good job on a daily basis. However, when a crisis like Katrina rolled in, the results were devastating.

In June of 2006 created our first website--www.savejude.com. Not only did that experience help me (mom) cope, it also helped me help! I realized there was a need for support when people started emailing me with questions, so I became a volunteer for the UMDF.

In 2007, feeling discouraged about limited research dollars and minimal awareness, I created a mitochondrion costume and a friend with sewing skills made that drawing a reality. I wore it at a casting call for Oprah's Big Give in order to raise money for mitochondrial research. Although I had high hopes after casting took my photo and said they'd call, I never heard back.

BUT every cloud has a silver lining! HGTV.com featured our costumes during Halloween. Jack Black agreed to wear one with our son Jude AND signed mine at UMDF Symposium! Athletes have signed them. Politicians have worn them. Cancer researchers and doctors have ordered them. I've seen them pinned on Pinterest and featured on blogs. Plenty of good friends and family members expressed skepticism, but the costumes took off. I've been sewing every year since.

Jude became more stable, and we bought the judesmitojourney.com domain. Sharing our story meant sharing the knowledge that we had learned the hard way. If your child has recently been diagnosed, you may feel that diagnosis was delivered with a death sentence. As you can see above in the smallest of smiles, that is not always the case.

Mitochondrial diseases are very different and affect different organs, so most people have different symptoms.

Mitochondrial Cytopathy (of the cell)
Mitochondrial Myopathy (of the muscle)
Mitochondrial Encephalopathy (of the brain)
Mitochondrial Encephalomyopathy (of the brain and muscle)

The complexes are part of the electron transport chain, also known as the respiratory chain. This has nothing to do with breathing. The reason it is called the respiratory chain is because mitochondria are subcellular organelles that oxidize sugars and fats to produce chemical energy called ATP so your cells can live. Mitochondria produce 90% of the body's energy. Without energy, organs fail. Diseases of aging like cancer, type 2 diabetes, Parkinson's, atherosclerotic heart disease, stroke, and Alzheimer's disease have been found to have defects in mitochondrial function. It's a lot bigger than just one little disease, and it's the root of many bigger problems. If you are dealing with some of these problems, we hope you find this website inspirational and informative.