Families warn of more deaths without MLD screening

Families whose children have metachromatic leukodystrophy (MLD) have warned it will be too late for many to receive treatment unless a review into newborn screening is brought forward.

MLD is a genetic condition which affects the brain and nervous system, causing a progressive loss of physical and mental abilities - it affects roughly one in 40,000 children.

A treatment called Libmeldy on the NHS can save children's lives if it is caught early enough.

The UK National Screening Committee's review opted against newborn screening over uncertainties about test accuracy, cost, and the effectiveness of treating the condition before symptoms start. The next review is due between 2029 to 2030.

Testing for MLD is already widespread in Europe and two families across the North East and Cumbria are campaigning for the UK to follow suit.

Campaigners want screening to be included in the newborn blood spot test - formerly called the heel prick test - which checks for rare but life-threatening conditions, usually taken at about five days old.

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Source: BBC News, 10 November 2026