Search

Vigil for Forest Gate baby with rare genetic disorder

PUBLISHED: 17:49 01 March 2019 | UPDATED: 15:41 04 March 2019

Maryam Malji has type 1 spinal muscular atrophy and may just have months to live. Pic:  Pic: Shakil/Abdullah Aid

Maryam Malji has type 1 spinal muscular atrophy and may just have months to live. Pic: Pic: Shakil/Abdullah Aid

Archant

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.

Related articles

Become a supporter

This newspaper has been a central part of community life for many years, through good times and bad. Coronavirus is one of the greatest challenges our community has ever faced, but if we all play our part we will defeat it. We're here to serve as your advocate and trusted source of local information.

In these testing times, your support is more important than ever. Thank you.

Most Read

Most Read

Latest from the Newham Recorder