The parents of Teddy Johnson, a seven-year-old boy who died from Metachromatic Leukodystrophy (MLD), are advocating for the inclusion of this rare disease in the UK's newborn heel prick testing. Teddy was diagnosed at 18 months, by which time it was too late for treatment. MLD, which affects about 1 in 40,000 births, can be managed effectively if detected early. The couple is set to meet with politicians, including the UK Parliamentary Under-Secretary of State for Public Health and Prevention, Sharon Hodgson, to push for policy changes. Earlier this year, the UK National Screening Committee decided against adding MLD to the newborn screening list, citing concerns over test accuracy. The Johnsons argue that early detection could have saved Teddy's life, and they are determined to raise awareness to prevent other families from experiencing similar tragedies. Experts highlight that while gene therapy for MLD was approved in 2022, it is only effective if administered before symptoms manifest. The couple's advocacy is drawing attention to the urgent need for improved screening practices in the UK.