Daniel Roque Hall is under prison guard in University College Hospital

Published: 1 November, 2012
by TOM FOOT

DANIEL Roque Hall enjoyed a childhood like any other. He liked to kick a ball about with his West Hampstead primary school friends in the park.

The early signs of his Friedreich’s Ataxia – an inherited genetic condition – first appeared when he was around the age of eight.
Now 30, Mr Hall cannot walk unaided, requires round-the-clock care and has been given just a few years to live.

Sue Millman, chief executive of Ataxia UK, explained the rare condition and the problems facing people suffering with it.

She said: “In Daniel’s case, the ataxia progresses and progresses to the point that in the end you cannot move. You cannot swallow and cannot talk. You can be in that position for many years.

“Can you imagine the kind of support you need? It’s massive.

"People are left caring for their relatives at home. Friedreich’s parents have a particular perspective on the world.”

She added: “What is worse, though, is that your intelligence is unaffected that you are still all there inside.”

Ms Millman and Ataxia UK have taken a leading role in a campaign in support of Mr Hall. He is under prison guard in University College Hospital after he was moved to intensive care from Wormwood Scrubs after his condition suddenly deteriorated.

Mr Hall pleaded guilty to cocaine smuggling in July after 2.8 kilos of the drug – with a street value of £250,000 – was found in the back of his wheelchair in an airport search.

Cam­paigners say the Prison Service cannot care for an ataxia patient and have called for him to see out his three-year sentence at home.

Ms Millman said Friedreich’s was like a “hidden killer” because death certificates rarely record it. The NHS, she said, keeps no figures on it and many GPs have not heard of it and do not think to look for its symptoms.

Despite this, 1 person in every 100 carries the recessive gene. If they have a child with another carrier, one in two of those children will inherit Freidrich’s ataxia.

It means that a family can have children – sometimes three or four – and only discover they all have the condition when they grow up.

Ms Millman said she knew of one sufferer who was not diagnosed until he was a qualified hospital consultant. There is no cure.

Ms Millman said she was “very concerned” that government health reforms could affect funding for rare conditions such as ataxia.

She added: “What’s extraordinary is the number or rare diseases like this – there are stacks and stacks of organisations just like us.

“The trouble I see is that GPs have never heard of these conditions, and never seen them.

“What will happen with specialist commissioning?

"If a surgery doesn’t have a patient with ataxia, will GPs simply choose not to fund care for it?

"What happens when they then have a patient with Ataxia.”

• For more information visit www.ataxia.org.uk