Metachromatic Leukodystrophy Screening

9. What steps he is taking to increase metachromatic leukodystrophy screening provision for infants.

I thank my hon. Friend for raising this issue and congratulate his constituent David Kiddie on the 190-mile walk he completed earlier this year to raise awareness and funds for those with MLD and their families. The Government are committed to listening to those with MLD and their families and acting with compassion and care to support them. The UK National Screening Committee, which advises the Government on all screening matters, is consulting on the outcomes of an evidence review looking at whether to screen for MLD.

In 2024, two-year-old Lily Stock was diagnosed with metachromatic leukodystrophy, a rare and progressive disease that will, in her family’s words, “slowly take Lily away”. Libmeldy, a lifesaving gene therapy, is available through the NHS, but I understand that it must be administered before symptoms develop. Sadly, that means it is too late for Lily to benefit from the treatment. 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 and no family will have to go 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?

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.

In my constituency, there is a little boy called Teddy, who was diagnosed with MLD—one of the most cruel and degenerative diseases, which is now treatable if diagnosed at birth. Teddy was diagnosed too late because there was no screening. He has lost his ability to walk and talk, and he even fights to smile—a battle that no child should ever have to face. The Minister knows that the treatment is now available, yet MLD has not been added to the simple heel-prick screening tests. Will she also agree to meet Teddy’s family when she meets the family mentioned by the hon. Member for Hertford and Stortford (Josh Dean) to discuss this issue? It is too late for Teddy, but for so many other children it is not.

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.