Zoe is ten now, TEN. Once upon a time , we weren’t even sure she would live this long. That’s what it’s like when you have a young sick child, diagnosed with mitochondrial disease.
I have been reading about mitochondrial disease all week, and thinking about how rarely we speak of it now. How we had to move on with our life and had to start living it. How time can change things.
Our questions about Zoe’s future were impossible to answer, and the only clinical estimate Zoe’s Doctor offered was “ The earlier the onset of the disease, and the more organ systems involved, the more severe the progression.” Zoe was almost 3, and we knew mitochondrial disease was affecting her brain, her muscles, her eyes and kidneys." This wasn't hopeful news.
Although Zoe’s diagnosis was not as severe as some, like this family’s story just published by CNN, the plan was the same- take your medicine, and take care- do whatever you can to avoid illness and fatigue and we’ll see what the future brings.
It has been a long ten years- and by looking at this picture, you wouldn’t know that. You can’t see the power wheelchair Zoe needs to move through large areas like school , or her push chair that we used on the day this picture was taken. You can’t see the walker she needs to stand unassisted or move through our home. You can’t see how her every moment, each step, each activity in her life has been adapted for her success and independence.