Lyn Brown spoke out in parliament this week about the heartache a family from Forest Gate face unless their five-month-old daughter is given Spinraza.
Maryam Malji suffers from a rare genetic condition, type 1 spinal muscular atrophy (SMA), which affects her walking, eating, drinking and breathing.
Medics have told her parents Zainab and Shakil she could have just months to live without Spinraza.
Despite the drug being free in Scotland and 23 other European countries, the NHS approval body NICE said it was not recommending it due to its price.
It costs £75,000 per dose and is administered by four injections into the cerebral spinal fluid, followed by a top-up injection every four months.
In a cruel twist, Maryam’s brother Abdullah also had SMA1 and was one of the first children to receive Spinraza when he was placed on a medical trial.
He died aged one in December 2015, from an infection, but the trial was successful and led to the drug being government-funded across Europe.
Ms Brown told the House of Commons that Maryam’s parents Zainab and Shakil felt used as the drug was trialled on Abulladah but is being denied to his sister and Biogen, the company that makes the drug, was using ‘heartless’ tactics.