The parents of a Portadown boy who died from a late-diagnosed rare condition are pressing the Prime Minister to ensure a promised review of newborn screening is carried out.

Jemma and Marvin Johnston lost their son Teddy in April to metachromatic leukodystrophy (MLD), an inherited disease that progressively destroys the brain and nervous system. A gene therapy has been available on the NHS since 2022, but it is only effective if given before symptoms appear.

The family welcomed last week's announcement that newborn screening in England will be expanded to include spinal muscular atrophy (SMA), another treatable condition. However, the UK National Screening Committee recommended against adding MLD to the heel-prick test in November 2025.

In an open letter, Upper Bann MP Carla Lockhart urged new Prime Minister Andy Burnham to act on a commitment made by his predecessor. During Prime Minister's Questions, Keir Starmer said he would have the MLD screening decision looked at again. Ms Lockhart wrote that the promise should not be forgotten with the change of government.

The Johnstons, along with MLD patient groups, met Public Health Minister Sharon Hodgson on 3 June. She undertook to review the case for screening with the Health Secretary. The family sent a follow-up letter with supporting evidence and expert contacts but has received no reply after more than six weeks.

Marvin Johnston said the family left the meeting feeling hopeful but has heard nothing since. He acknowledged that the SMA announcement was rightly a priority but stressed that families affected by MLD are still waiting.

Ms Lockhart described the SMA screening expansion as a landmark decision and said MLD deserves the same urgency. She called on the Government to complete the promised review without delay and set out a clear pathway to adding MLD to the newborn screening programme.

Campaigners point to a validated test and international evidence, including Norway's national programme, which has screened more than 80,000 babies since January 2025 with no false positives and multiple successful diagnoses. Georgina Morton, chairperson of ArchAngel MLD Trust, said a clinically approved treatment and a validated test already exist and there is no reason to wait while more children are diagnosed too late.