A teenager fighting for a life-changing drug to be available on the NHS has urged the prime minister to help.
Brogan Johnson, 17, from Leigh-on-Sea in Essex, has a rare genetic disorder called Friedreich’s ataxia, which affects her nervous system, mobility and heart.
Omaveloxolone, which could slow her condition, costs about £1,000 a day to fund privately in the UK.
“Every single day I struggle knowing that mums fix everything and I can’t fix this,” said Brogan’s mother, Karly.
The pair delivered a letter to 10 Downing Street on Tuesday, pleading with Andy Burnham to assist Brogan and the 1,100 others living with the life-limiting condition in the UK.
Some of those sufferers joined them at Westminster.
A petition on the matter has already attracted 100,000 signatures, including from ex-heavyweight boxer Frank Bruno.