Commons Sense

House of Commons · Ministers' Questions

Metachromatic Leukodystrophy Screening

Tuesday 22 July 2025 · 2 questions

Summarised by AI from the official record, so it can contain mistakes.

Read the full transcript on Parliament.uk

At a glance

Answered 0 Partly answered 2 Not answered 0

Key points

  • Josh Dean asked questions about Lily Stock, a two-year-old diagnosed with metachromatic leukodystrophy (MLD) in 2024, highlighting the need for early diagnosis.
  • Carla Lockhart inquired about Teddy, a child from her constituency diagnosed with MLD, emphasizing the need for newborn screening through heel-prick tests.
  • The Minister expressed willingness to meet with the families of Lily and Teddy once the UK National Screening Committee completes its review.

Topics (select to filter)

Questions & Answers

Q1 Josh Dean Lab Hertford and Stortford
NHS
Context

In 2024, two-year-old Lily Stock was diagnosed with metachromatic leukodystrophy (MLD), a rare and progressive disease. 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.

Question

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?

Answer from The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)

I thank my hon. Friend for raising this matter. Lily’s story really lays bare the heartbreak that rare diseases can bring and the vital role that early diagnosis can play. I am happy to meet my hon. Friend and Lily’s family. May I suggest that we meet when the UK National Screening Committee has completed its review, so that the Government have received advice on this important matter? We can then discuss that advice together.

Partly answered

Not addressed: Commitment to add MLD screening to the heel-prick test without specific details or timeline

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Q2 Carla Lockhart DUP Upper Bann
NHS
Context

In Carla Lockhart's constituency, a little boy called Teddy was diagnosed with MLD after it was too late for early intervention. The treatment is now available through the NHS but lacks early screening due to its absence from newborn heel-prick tests.

Question

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?

Answer from The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)

As the hon. Lady points out, for Teddy and Lily it is sadly too late for that treatment. That is why we are looking at screening. I would be delighted to meet with Teddy’s family once we have the outcome from the screening review.

Partly answered

Not addressed: Commitment to add MLD screening without specific details or timeline

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