Q&A

What is Charlie’s condition? Mitochondrial DNA depletion syndrome stops the body’s cells producing enough energy. There is no accepted cure. Charlie is the 16th known person in the world to have a strain called RRM2B. The other 1 have all died. What is the US therapy?

It is a drug called nucleoside bypass therapy. It replaces deoxynucleosides, which are naturally produced in healthy people, to repair DNA.

Is that what saved US boy?

Yes. But six-year-old Art Estopinan has the TK2 strain, a variation of Charlie’s condition, and is one of 83 recorded cases. While the therapy has kept him alive, he is still severely disabled. It has never been tried on anybody with RRM2B. The US doctor who has offered to treat Charlie said it would not repair brain damage, but might prolong his life.

Why do UK doctors object?

They don’t think the therapy will work and they believe Charlie – who they say is brain damaged – is likely to be feeling pain.

Do his parents agree?

No. They say Charlie is not brain damaged and is growing stronger.

Who decides his ‘best interests’?

Lawyers for Charlie’s parents say it is no one’s business but their own. But the guardian appointed by the High Court recommended death. The judges backed the doctors.

Why can’t they take him to the US alone?

Charlie is in intensive care and cannot be moved without doctors’ help.

Would it work for Charlie?