‘If our daughter was screened at birth she could have been treated’
Lily is affected by metachromatic leukodystrophy (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.
Karen, our Director of Support, told BBC news how MLD and adrenoleukodystrophy (ALD) are treatable. “Treatment is expensive, but so is the financial cost of caring for these children for the remainder of their lives,” she says. “We’re talking about young children losing their lives in horrible ways, experiencing some of the worst symptoms imaginable while they are alive.”
To read the full article: Hertfordshire girl with MLD ‘could have been treated if screened’
