Jesy Nelson Criticises Government Over Delay in Newborn SMA Testing

Jesy Nelson has slammed the government for the delay in approving SMA testing for all UK-born babies, saying "it shouldn't have taken me to come along for this to happen – it's been going on for years". The mother-of-two's 14-month-old twins, Ocean and Story, were diagnosed with SMA Type 1, a rare muscle-wasting condition, in January.

Jesy Nelson announced this week that the SMA Type 1 screening test will now be rolled out across the whole of the UK, after months of campaigning. The test will be introduced in October and will see hundreds of thousands of babies screened. SMA can leave babies unable to sit up, crawl or walk, and in severe cases, stops them breathing or swallowing.

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The screening test works through a simple heel prick to collect a small sample of blood from the baby, taken shortly after birth. Jesy voiced her anger at the delay, saying she was "super proud" but also felt it was "bittersweet". She explained that Wales and Northern Ireland still don't have the screening test, and she won't stop campaigning until it's available everywhere.

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Politician Sharon Hodgson, Parliamentary Under-Secretary of State in the Department for Health and Social Care, had previously argued against rolling out the screening test across the whole of England. She said the remaining six laboratories "do not currently have the requisite equipment" for testing. However, after meeting with Jesy and seeing a video of sisters Maisie and Amelia, who both have SMA but one was treated from birth and the other wasn't, Sharon was "gobsmacked" by the difference treatment can make.

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Jesy said she was "so proud" of everyone involved in the campaign, and that the decision to roll out the screening test will make a huge difference to babies with SMA. She added that it's "amazing" and "mind-blowing" to think that future SMA babies' lives will look completely different. The screening test will begin in October, and Jesy will continue to campaign for it to be available everywhere.

Jesy addressed her followers on Instagram, reflecting on the disappointment of the initial decision and calling out Sharon Hodgson for her argument against the screening test. She asked Sharon how it makes sense that 72 per cent of England can have the test, but 28 per cent cannot. Jesy showed Sharon a video of the sisters, and Sharon was shocked by the difference treatment can make.

The government has now confirmed the expansion of the scheme, which will see hundreds of thousands of babies screened. Jesy said it's an "emotional day" and she's "still taking it in". She feels proud of everyone who has been part of the campaign, and she's happy that future SMA babies' lives will be different.

Source: Daily Mail