A mother from Daventry whose son has a rare muscle-wasting condition has told of her fears that treatments may never reach him.
Linda Ball, whose son Daniel, 13, has the rare muscle-wasting condition Duchenne muscular dystrophy, is frustrated that plans by NHS England released this week do not contain any answers on how the health service plans to fund high-cost treatments for rare diseases.
She said: “Over the last six months Daniel’s condition has deteriorated rapidly. He has gone from being able to walk a small distance to now only being able to take a few steps.
“Our big fear is that if treatments do become available, we will face an endless wait for the NHS to actually deliver them. They will be expensive, but so are the admissions to A&E and the long stays on specialist wards they may help to prevent.
“Daniel’s condition is affecting him more and more each day – we are clutching at straws. We can’t change the pace of medical progress – but we make sure not a moment is wasted if a therapy is shown to work.”