LOCKHART LEADS WESTMINSTER DELEGATION IN PUSH FOR LIFE-SAVING MLD SCREENING

Carla Lockhart MP • June 2, 2026

Upper Bann MP Carla Lockhart will tomorrow lead a delegation to Westminster as part of the campaign to secure the inclusion of Metachromatic Leukodystrophy (MLD) in the UK newborn heel-prick screening programme.

Joining Ms Lockhart will be Gemma and Marvin Johnston from Portadown, whose seven-year-old son Teddy tragically passed away from MLD. During their visit to Westminster, they will meet Health Minister Sharon Hodgson as well as the Conservative and Reform health spokespersons to press the case for urgent action.


The visit follows Ms Lockhart's recent Prime Minister's Questions exchange, during which the Prime Minister committed to reviewing the recommendation relating to MLD screening.


Speaking ahead of the visit, Carla Lockhart MP said:


"Teddy Johnston should still be a fun-loving seven-year-old, enjoying life with his family and looking forward to the future. Instead, his family are living with the unimaginable pain of losing a much-loved little boy to a condition for which a treatment exists.


I have been greatly inspired by Gemma and Marvin. In the midst of their grief, they have turned their focus towards helping other families and ensuring that Teddy's legacy is one of hope and change. Their courage, determination and dignity have been remarkable.


This is a change I am determined to help bring about. It is within reach. The treatment is available. The key is early detection.


Tomorrow we will deliver a strong, robust and impassioned message to Ministers and health spokespeople. We cannot continue with a situation where a life-saving treatment exists, yet too many children are unable to benefit from it because diagnosis comes too late.


Our campaign is focused on securing the inclusion of MLD in the newborn screening programme so that children can be identified before symptoms appear and access treatment when it can have the greatest impact. The science is clear. We have the treatment. We have the expertise. What is needed now is the political will to act.


I welcomed the Prime Minister's commitment to review this issue and tomorrow's meetings provide an important opportunity to build support across Parliament. My message is simple: if early detection can save lives, then we must do everything in our power to make that happen."

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