The parents of a seven-year-old boy from Portadown who died in April from a rare metabolic disorder are meeting politicians in Westminster on Tuesday to call for newborn screening that they say could have prevented his death.

Teddy Johnson was diagnosed with Metachromatic Leukodystrophy at 18 months old. His mother Jemma Johnson said he showed no early signs of the condition and hit all developmental milestones until he developed a limp at around 17 months.

The family was informed that treatment was available but only for children without symptoms. Teddy later lost the ability to walk, talk, and move independently, and died on 16 April.

Jemma and Marvin Johnson are campaigning for MLD to be included in the UK newborn heel prick test. They will meet UK Parliamentary Under-Secretary of State for Public Health and Prevention Sharon Hodgson and other politicians.

DUP MP Carla Lockhart has backed the campaign and called on the prime minister to review the decision. Sir Keir Starmer has pledged to re-examine the inclusion of MLD in newborn screening.

The UK National Screening Committee previously recommended against adding MLD to the test, citing uncertainty over test accuracy and long-term outcomes. The Department of Health and Social Care said the committee is considering a new evaluation.

Professor Simon Jones said gene therapy approved in 2022 can treat the condition if started before symptoms appear. He noted that of 40 children diagnosed since approval, only eight have received treatment.