Parents of terminally-ill Eastbourne toddler campaign for MLD screening

Nellie Oakeshot developed symptoms of MLD at the age of 10 months

A family whose daughter was diagnosed with a terminal brain disorder are calling for more screening for the condition.

Nellie Oakeshot, from Eastbourne in East Sussex, has metachromatic leukodystrophy (MLD), and is likely to die by the age of five.

A cure for the disorder is available but only works before symptoms develop.

"I can't save her" said her mother Megan Gillett, "so I have to save someone else. That's all I can do".

Nellie, aged two, developed symptoms at 10 months old, and was diagnosed with MLD last month.

Children with the condition lack an enzyme, which allows toxic material to build up, destroying the nervous system.

'We will lose her'

"She can't crawl anymore, or move or roll. She will lose all speech - we've lost 70 per cent of her speech already - she'll probably lose her sight," said Ms Gillett,

"Eventually she'll be in a vegetative state with no understanding of what is going on around her.

"Then we will lose her."

Ms Gillett wants MLD added to the Newborn Screening Programme so it can be tested for in the standard heel prick test carried out when babies are five days old.

Eastbourne MP Caroline Ansell raised the issue in Parliament during Prime Minister's questions and was told the National Screening Committee is looking into it.

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