Ms Lockhart was joined by Jemma and Marvin Johnson, whose seven-year-old son Teddy tragically passed away from MLD six weeks ago, and Georgina from the ArchAngel MLD Trust.

The visit was arranged in the wake of Ms Lockhart’s PMQs exchange with the Prime Minister, during which she highlighted Teddy’s story and the fact that while a treatment for MLD exists in the UK, it is only effective if the condition is identified at birth through newborn screening. In response, the Prime Minister committed to reviewing the issue.

As part of the Westminster visit, the delegation met with Health Minister Sharon Hodgson, as well as MPs and members of the media, to build support for the campaign and ensure Teddy’s story remains at the forefront of discussions around newborn screening.

Speaking following the meetings, Carla Lockhart MP said:

“We are here because of the commitment made by the Prime Minister in response to Teddy’s story. That commitment has opened an important conversation, and our job now is to ensure it leads to meaningful action.

We were pleased that Health Minister Sharon Hodgson took the issue seriously, listened carefully to the evidence presented and agreed to look into the matter further with the Health Secretary. That is an important step forward, and we welcome her willingness to engage with the case for change.

The Minister was clearly concerned by the gap that now exists between what modern medicine can achieve and what our screening programme is designed to detect. We discussed how other countries have moved ahead in expanding newborn screening while the UK has been slower to adapt, despite treatments now being available for conditions such as MLD. There was a clear understanding that science has moved on and that our screening programmes must move with it. Families deserve nothing less.

Teddy should still be a fun-loving seven-year-old, enjoying life with his family and looking forward to the future. Instead, his family are left with the unimaginable pain of loss while campaigning to ensure other children are given the opportunity he never had.

MLD is a devastating disease. If it is not diagnosed and treated before symptoms appear, children rapidly lose the ability to walk, talk, eat, sleep, see and hear, before ultimately dying at a very young age.

What makes this even more heartbreaking is that we have a treatment available in the United Kingdom. However, it is only effective if the condition is identified before symptoms appear, which means diagnosis at birth through newborn screening. We have the science, we have the expertise and we have the treatment. What is needed now is the political will to ensure screening keeps pace with medical advances.

I want to pay tribute to Jemma and Marvin for their incredible strength and determination. Despite their unimaginable grief, they have shown extraordinary courage in sharing Teddy’s story and fighting for change. Their determination to ensure that no other family suffers as they have is truly inspiring.

I also want to thank Georgina and the team at the ArchAngel MLD Trust. Their expertise, commitment and tireless advocacy over many years have helped bring us to this point.

The meetings were an important step forward, but our work is far from done. We will continue to engage with Ministers, MPs and decision-makers until this issue is properly addressed.

In Teddy’s memory, we will keep fighting until MLD is included in newborn screening and no other child is denied the opportunity that early diagnosis can provide.”

Ms Lockhart said she would continue working with Teddy’s family, the ArchAngel MLD Trust and parliamentarians from across the United Kingdom to ensure momentum is maintained and that the Government follows through on the commitment made by the Prime Minister.