Vigil for Forest Gate baby with rare genetic disorder
PUBLISHED: 17:49 01 March 2019 | UPDATED: 15:41 04 March 2019
A vigil is set to take place for a Forest Gate baby who is being denied a “wonder drug” that could save her life.
Little Maryam Malji’s parents Zainab and Shakil have been told she could have just months to live after being diagnosed with type 1 spinal muscular atrophy (SMA), a rare genetic disorder which affects walking, eating, drinking and breathing.
Her brother Abdullah also had SMA1 and was placed on a medical trial for drug Spinraza.
The one-year-old died from an infection in December 2015 but the trial was successful and led to Spinraza being government-funded in 24 European countries - although not in England, where the NHS approval body NICE said it was rejecting it due to its cost.
A decision on whether to give Maryam the drug is set to be made on Wednesday, and supporters are invited to take part in a vigil outside NICE’s headquarters in Spring Gardens, near Trafalgar Square, between 12.30pm and 1.30pm.
Maryam’s family and friends, as well as supporters including West Ham MP Lyn Brown - who raised the issue in the House of Commons - are expected to be there.