CJD victim, 18, is first to undergo brain treatment

Health Editor,Jeremy Laurance
Friday 10 January 2003 20:00 EST
Comments

Your support helps us to tell the story

From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.

At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.

The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.

Your support makes all the difference.

Surgeons operated yesterday on a teenager dying from variant CJD, the brain disease linked with eating BSE-infected beef, in preparation for the start of an experimental treatment aimed at arresting the fatal disease.

Jonathan Simms, 18, from Belfast, will become the first patient in the world to undergo the treatment when it begins next week. His family won the right to have him given the drug, pentosan polysulphate, after High Court hearings in London and Belfast. In December, a judge concluded any risk from the drug's use was acceptable as without treatment Jonathan, was certain to die.

The family said they believed the treatment was Jonathan's only chance. His father, Don Simms, said: "It's an experimental treatment but it's not for experiment for experiment's sake. We are relieved that we are here but at the same time we are quite frightened as we are stepping in to the unknown."

Surgeons placed an ommaya reservoir, a small plastic dome-like device, under Jonathan's scalp, with a small tube leading into the centre of his brain. The drug will be placed in the reservoir and infused slowly into the brain.

It has never been used to treat CJD in humans before, although it has been shown to slow the disease in animals. The judges decided that the chance of Jonathan deriving some benefit was worth the risk, despite warnings from medical specialists of the dangers.

A neurosurgeon has flown in to perform the operation at a Northern Ireland hospital. Neither can be named for legal reasons. Daily infusions of the drug are expected to begin on Monday and treatment is expected to be completed within two weeks.

Join our commenting forum

Join thought-provoking conversations, follow other Independent readers and see their replies

Comments

Thank you for registering

Please refresh the page or navigate to another page on the site to be automatically logged inPlease refresh your browser to be logged in