Prime Minister Andy Burnham called to make vital change to newborn screening in memory of much-loved Portadown boy Teddy Johnson
The Portadown parents of a seven-year-old boy who died from a rare genetic condition earlier this year have welcomed the Government’s decision to expand the screening of newborn babies, but say it still needs to be taken a step further.
Jemma and Marvin Johnson lost their son Teddy in April after he was diagnosed too late to benefit from a gene therapy available on the NHS for metachromatic leukodystrophy (MLD).
MLD is a rare inherited condition that progressively destroys the brain and nervous system, robbing children of the ability to walk, talk, swallow and breathe. Since 2022, a clinically approved treatment has been available on the NHS, but it only works if children are diagnosed before symptoms begin.
The couple, still grieving for their much-loved son, have been campaigning for MLD to be added to the NHS newborn heel-prick screening programme.
They welcomed last week’s announcement that newborn screening is to be expanded for spinal muscular atrophy (SMA) across England, but admitted the breakthrough left them with mixed emotions.
Like SMA, MLD can be treated if identified before symptoms develop, yet the UK National Screening Committee recommended against adding MLD to the newborn heel prick test in November 2025.
The couple described the announcement as “bittersweet”.
"We’re genuinely delighted that babies with SMA will now have the chance to receive life-saving treatment before it’s too late. But as we’re still grieving Teddy, it's impossible not to think about the opportunity he never had,” Jemma and Marvin said.
"If newborn screening can save the lives of children with SMA, we simply don’t understand why children with MLD are still waiting. We hope ministers will now give them that same chance.”
The Johnsons met with the Minister for Public Health and Prevention, Sharon Hodgson MP, in Westminster on June 3, alongside representatives from the MLD patient organisations. During the meeting, the Minister committed to review the case for newborn screening for MLD with the Health Secretary James Murray.
Following the meeting, the family and patient organisations wrote to the Minister, providing further evidence and offering access to leading experts in newborn screening and MLD. More than six weeks later, they have not received a response to that letter or any update on the progress of the review.
Marvin Johnson said: “When we met the Minister, we left feeling hopeful. She listened, understood what was at stake and committed to reviewing the case. Since then, we’ve heard nothing.
"We appreciate that Thursday’s announcement for SMA has rightly been a priority, but families affected by MLD are still waiting to hear whether the Government intends to act before more children lose their chance of treatment.”
The couple are being supported in their campaign by Upper Bann MP Carla Lockhart who urged new Prime Minister Andy Burnham to honour the commitment of his predecessor Keir Starmer to review the situation which has potential to save children’s lives.
In an open letter to Mr Burnham, the DUP MP said: “Following Teddy’s death, I raised his case directly with the then Prime Minister during Prime Minister’s Questions. I asked him to review the decision not to include MLD within the newborn screening programme.
"His response was clear: ‘I will do precisely as she asks. I will make sure we look at this again.’
“That commitment should not be forgotten now there is a change of government,” said Ms Lockhart.
"Following that commitment, Teddy’s parents and I met the Health Minister, who assured us the issue would be reviewed. We welcomed that commitment and now expect it to be honoured.”
Ms Lockhart described the announcement that SMA would be added to the heel-prick test as “a landmark decision” that would “transform lives”.
"MLD deserves the same urgency. The treatment exists. The expertise exists. The screening programme already exists. What is needed now is the political will to act,” she stressed.
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Ms Lockhart called on the Prime Minister to urge the Government to complete the promised review without delay and set out a clear pathway to introducing MLD into the national newborn screening programme.
"Teddy Johnson should not simply be remembered for the disease that took him. His legacy should be that future children receive an early diagnosis and the chance of life-saving treatment that he never had.
"Please honour the commitment made by your predecessor. Please honour the promise given by the Minister.
"Most importantly, please act before another family is told that their child was diagnosed too late,” she added in the open letter.
Campaigners say there is already a validated newborn screening test for MLD and point to international evidence, including Norway’s national screening programme, where more than 80,000 babies have been screened since January 2025 with no false positive results and multiple children successfully diagnosed.
Georgina Morton, chairperson of ArchAngel MLD Trust, said this announcement “will save children’s lives, and everyone involved deserves enormous credit”.
She added: “We warmly congratulate the SMA community and ministers on this landmark achievement. We now hope the same life-saving opportunity will be extended to children born with MLD.
"We also already have a clinically approved treatment available on the NHS and a validated screening test. There is no reason to wait while more children are diagnosed too late.”
Campaigners estimate that around one child every month is diagnosed too late to receive life-saving treatment because MLD is not included in the newborn screening programme.
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