In 2024, two-year-old Lily Stock was diagnosed with metachromatic leukodystrophy (MLD), a rare and progressive disease that will slowly take her away. Libmeldy, a lifesaving gene therapy available through the NHS, must be administered before symptoms develop but is too late for Lily due to lack of early diagnosis. Emily and Sean, Lily’s parents, are campaigning for MLD screening to be added to the heel-prick test on newborns so that MLD can be identified early and treated effectively, preventing families from going through this devastating experience. Will the Minister and her officials look into adding MLD screening to the heel-prick test, and will she and the Secretary of State join me to meet Lily’s family and hear their story at first hand?

In my constituency, there is a little boy called Teddy who was diagnosed with MLD—one of the most cruel and degenerative diseases that is now treatable if diagnosed at birth. Teddy was diagnosed too late because there was no screening for MLD on the simple heel-prick test available to newborns, resulting in his loss of walking, talking, and ability to smile. The Minister knows that the treatment is now available but not administered early enough due to lack of screening. Will she also agree to meet Teddy’s family when she meets with Lily's family mentioned by the hon. Member for Hertford and Stortford (Josh Dean) to discuss this issue?