Mum's desperate plea for NHS to fund drug that could stop her six-year-old son developing dementia

The mum of a boy diagnosed with a fatal and extremely rare condition that can cause dementia is urging the NHS to fund a drug which she believes could help him lead a normal life.

Kate Toohey, 30, said her son James was a happy, seemingly healthy, toddler when a rare disease caused a sudden seizure four years ago.

James, now six, began foaming at the mouth and went stiff in her home.

Her son was later diagnosed with Batten disease - an incurable, fatal and extremely rare condition that can cause dementia and stop the body working.

She said he had been lucky to get onto a medical trial for a drug called cerliponase alfa, which she says has significantly slowed down the illness.

But health chiefs have decided not to fund the £500,000-a-year treatment on the NHS, saying it is too expensive and the long-term evidence too unclear.

The decision means James is unlikely to receive the drug from January 2020 when the trial ends - and could deteriorate rapidly soon afterwards.

The announcement has sparked a huge backlash this month, with around 75,000 people signing a petition in protest.

Ms Toohey shared her story to fight for her son's life, as health bosses are still consulting the public on the proposals.

She said:

She said James appeared normal at first but when he was two years old, he got a bit slower at walking and talking and then started having seizures.

But she said she was lucky to find out James met the criteria to take part in a medical trial at Great Ormond Street Hospital, in London.

Ms Toohey and her son then moved down to London to take part in 2014 - and she said the results had been incredible.

Her son had to have surgery initially and then had to have a drug injected into his brain through a needle to top up his enzymes.

She said:

Dr Peter Jackson, chair of an independent committee at NICE, said: