Eastbourne two-year-old with rare genetic condition is discussed in Parliament

The case of a child in Eastbourne with a rare genetic condition was raised in Parliament this week.

Two-year-old Nellie Oakshott suffers from metachromatic leukodystrophy (MLD) – a condition that could have been picked up by a newborn heel prick blood test.

Currently the NHS doesn’t screen for MLD.

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Tom Oakshott and Megan Gillett with Nellie

MP Caroline Ansell raised the issue in Prime Minister’s Questions yesterday (Wednesday, June 15).

She said, “One of my youngest constituents, little Nellie Oakshott, is two years old and has been diagnosed with metachromatic leukodystrophy.

“Her very brave parents, Megan and Tom, are supporting a campaign for MLD to be added to the newborn blood spot test. Had it been included in the test, Nellie’s condition could have been treated.

“Now the family are squaring up to palliative care and planning to make every day count.

“Will the Prime Minister give his support to adding MLD to the heel-prick test, so that families can be spared the same heartbreak in future?”

PM Boris Johnson said, “I know that everybody’s thoughts will be with Nellie and her parents, Tom and Megan, at this very difficult time.

“The UK National Screening Committee has received a request to look again at the conditions for doing an MLD test, and that is being reviewed right now.

“I will make sure that my honourable friend gets a meeting as soon as possible with the relevant minister.”

Now Mrs Ansell will meet with the health minister to discuss the issue further.

Speaking afterwards she said, “I am very pleased to hear that including MLD in the heel prick test is under review and I will be meeting with the relevant minister as soon as I can to make the point that it should be in practice.

“I would like to thank Tom and Megan for allowing me to raise this important issue in Parliament today.

“I asked them for permission to do so beforehand because I know they want some good to come from what has happened to their lovely daughter even though I know they must have found it difficult.

“I will continue to do everything I can to ensure MLD is added to the newborn test because it will save young lives and much heartache.”

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