What is it like to live with a rare disease? This is what my daughter says:
“Doctors try to help but no one does.”
“I don’t know why I have ataxia and I don’t know why I can’t hear no more. No body does.”
“I have to go to the doctor a lot. That’s boring.”
“Everybody wants to poke me and give me a blood shot (blood draw)!”
“I used to be able to walk and not have to use a walker all the time but now I can’t and nobody know’s why.”
“Why is there no medicine to make me feel better?”
As her mom, I struggle to answer her questions. But what can I say? She is now 20 and has lived with an undiagnosed mystery disease her entire life. The closest label her illness has is Mitochondrial Disease. But which one? What type? How degenerative is it? How long does she have?
We don’t know.