This from a Q&A page on the Great Ormonde Street Hospital website:
What is his condition?
Charlie’s condition is exceptionally rare. He suffers from an inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”. Charlie suffers specifically from the RRM2B mutation of MDDS.
Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie's heart, liver and kidneys are also affected.
Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided.
Charlie's eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Eyesight is not something you’re born with, it develops over time.
From the statements I've read by doctors both here and in the US, Charlie will never recover and only has a 10% chance of surviving the experimental surgery they intend to carry out. His condition is irreversible so I have to wonder who will benefit by prolonging his life. Reading all the above symptoms, you can't even say it will a life of misery for him because he will never know anything about it.
A very sad case but there really is no reason to keep him alive under such circumstances.
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