The parents of a seven-year-old County Armagh boy who died from a rare generic condition have welcomed confirmation that new-born screening is to be expanded but insist the announcement does not go far enough.
Teddy Johnson, from Portadown, passed away in April, having been born with metachromatic leukodystrophy (MLD).
On Thursday, the UK Government announced its decision to expand new-born screening for spinal muscular atrophy (SMA) across England.
For Teddy’s parents, Jemma and Marvin Johnson, the confirmation – three months to the day since they lost their little boy – has brought bittersweet emotions as they continue to grieve for their son.
Teddy had been diagnosed too late to benefit from a gene therapy available on the NHS.
Like SMA, MLD can be treated if identified before symptoms develop, yet the UK National Screening Committee recommended against adding MLD to the new-born heel prick test in November 2025.
Teddy’s parents believe that children with MLD should not be left behind.
Mum Jemma, speaking to Armagh I on Friday, said: “It’s not the same condition, but both have an approved treatment available on the NHS.
“It only seems logical to screen for MLD too, especially as there is already a validated screening test and an effective treatment ready to be used.
“I’m very pleased that SMA will get their opportunity. Obviously, it’s still only being rolled out in England, but it’s still a good bit further than it was.”
She added: “Yesterday’s announcement was bittersweet for our family. 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.
“If new-born 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 at the start of June, alongside representatives from the MLD patient organisations.
During the meeting, the Minister committed to review the case for new-born screening for MLD with the Health Secretary James Murray.
“The National Screening Committee haven’t added anything extra to the test in over 10 years,” explained Jemma. “Even when we met with the Minister, Sharon Hodgson, she was even taken aback that we were falling behind other countries when the NHS should be leading it.”
Dad Marvin added: “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 yesterday’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.”
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.
Teddy’s battle had also prompted Upper Bann MP Carla Lockhart – who has been backing the Johnson family from the start – to raise his case in Parliament, where she appealed directly to the UK Government to add MLD to the new-born screening programme back in July last year.
“MLD is one of the most cruel, degenerative diseases,” she said at the time. “It is rare, but treatable only if diagnosed before symptoms appear. Tragically, Teddy’s diagnosis came too late because there was, and still is, no newborn screening in place to detect MLD.
“It’s a simple check that could mean the difference between life and unimaginable heartbreak. Early detection opens the door to life-saving treatment. Without it, families are left facing the unimaginable.
“No parent should have to watch their child fade away knowing that a simple heel prick could have stopped it. We are not asking for a miracle – just a test.”
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.
For little Teddy, it came all too late and he was never given that chance.
Jemma and Marvin are still grieving for their beautiful boy and will always carry him in their hearts.
“He was cheeky, he was mischievous, he was your very typical little boy,” said Jemma. “Obviously, this was pre him losing his abilities. There’s an Instagram post that I did with the help of a friend, to show what Teddy was like, and how it affected him, because I think not a lot of people understood that he wasn’t always like that.
“I think for us, it was very difficult for us to watch all these milestones being made and then, one by one, taken away again.
“It’s only three months yesterday that he passed, so it’s still quite raw.”
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.
They estimate that around one child every month, like little Teddy, is diagnosed too late to receive life-saving treatment because MLD is not included in the newborn screening programme.
Georgina Morton, Chairperson of ArchAngel MLD Trust, said Thursday’s announcement will save children’s lives and everyone involved deserves enormous credit.
“We warmly congratulate the SMA community and Ministers on this landmark achievement,” she said.
But she added: “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.”
