Mitochondrial Disease Awareness Week

This week is Mitochondrial Disease Awareness Week.

The United Mitochondrial Disease Foundation works to raise awareness of Mito and to raise funding for research of the disease. By raising awareness about the disease and its effects on so many people, we hope to bring in donations to the UMDF to hopefully find cures for the different disorders. Mito is not a rare disease; however, most people have not ever heard of it. Through awareness week we hope to change that.

Tucker was diagnosed with Mito in July, so I have explained and re-explained this disease in the last few months. You can go back to my blogs from July and August to read more technical info on it.

The main point is that Tucker's mitochondria don't provide energy to his cells like they should. It's like his batteries are always running on low. Most people go to sleep to "recharge" their batteries, but for Tucker, sleep is never enough. His sleep isn't even restful, so he lives life in a state of exhaustion. This manifests in many different ways, depending on the person.

For Tucker, Mito mainly affects the cells in his brain. His brain is smaller than other 4-year-olds; in fact, it hasn't grown in about 3 years. He has autism, he is developmentally delayed, and attention problems, all of which can be linked to his mito. Tucker's case is so complex because he was born at 27 weeks, so most of his problems were blamed on that. Prematurity has taken so much from us, but there was always hope that he would "get over" some of those issues. In fact, he has...he got his trach out last year. Mito has taken even more from Tucker and our family....Tucker's ability to interact with his world, because his mito is strongly linked to his autism.....the hope that things can get better, as we know with Mito symptoms get worse not better....the security that parents feel knowing that they will watch their children grow and thrive; no mito family is guaranteed that.

We know that over time it will be harder and harder for Tucker's mitochondria, or "his batteries", to provide energy to his cells, and that one day his batteries will lose the ability to recharge at all. We hold out hope that this day will be years and years from now, and that in the interim the UMDF and researchers will find a cure so that this day will not have to come.