Family Stories - Jonah

Family stories from the Myotubular Trust

Family stories from the Myotubular Trust

Family stories from the Myotubular Trust

 

Jonah is 10 years old and was born in San Antonio, Texas. We didn't know what was wrong with him at birth, and thought it was the side effects of an epidural. But Jonah experienced breathing problems and eventually he was diagnosed as having myotubular myopathy. They told us he wouldn't live past his first year, but they trached him and gave him a g-tube. He began to thrive. He could now eat and breathe. He has a sub-glottal blockage, so he can only breathe through his trach and he cannot speak, he is mute...but boy, can he use sign language :) He talks more than I do! (He also makes clicking noises with his tongue.) I was trained by his nurses, and we soon learned to take care of Jonah's needs.

Jonah's mother Jennifer Darr has written a number of beautiful poems about her son, and you can read them here.