MLD

Lily's parents are calling on the government, for the NHS and National Screening Committee to add MLD to the list of serious genetic conditions that are screened for at birth.

"The only way we could have saved Lily would have been to know she had MLD before it started to take effect", Emily says.

Libmeldy was first used in the UK in 2023 when it successfully halted the progress of MLD in Teddie.

The odds of carrying MLD are 40,000 to one.

It's only if both parents carry it that MLD can be passed onto their child, with a 25% chance of that happening per pregnancy.