Metachromatic leukodystrophy and newborn screening
Tabled 2 June 2026 by Carla Lockhart
That this House remembers Teddy Johnston of Portadown, who tragically lost his life to metachromatic leukodystrophy (MLD); commends the courage and determination of his parents, Marvin and Gemma Johnston, in campaigning for change; recognises that a commissioned treatment for MLD already exists in the UK and is most effective when administered before symptoms appear; notes that early diagnosis through newborn heel-prick screening is essential to ensure children can access that treatment; further notes that the UK has fallen behind many comparable countries in expanding newborn blood spot screening, despite the availability of life-changing treatments for a growing number of rare conditions; welcomes the Prime Minister’s commitment to review the recommendation of the UK National Screening Committee in relation to MLD screening; and calls on the Government to act urgently to include MLD in the newborn heel-prick screening programme so that Teddy’s legacy is one of hope and that no other family experiences a preventable loss.