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It has been revealed following Jesy’s campaigning it would only cost 36p per child to add this SMA screening (heel prick test) to the standard newborn screening test in the UK. 36p to save a life and/or better a babies life and prevent disability. Change needs to happen.

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Jesy Nelson Updates

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148,143 Aufrufe • vor 7 Monaten •via X (Twitter)

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💔 Teddy Johnson: Prime Minister indicates degenerative condition that 'stole a seven-year-old boy’s smile' could be added to the heel prick test 🗣DUP MP Carla Lockhart MP raising the matter in the House of Commons. Teddy Johnson, from Northern Ireland, died after suffering from metachromatic leukodystrophy (MLD), which can affect the brain and cause the loss of physical and mental skills. The disease can be treated if it is detected early enough, but the national body for screening recommended against it being added to the heel prick test for infants, which is used to identify rare conditions. Democratic Unionist Party MP for Upper Bann, Carla Lockhart, urged Sir Keir Starmer to step in and reconsider adding it to the test during Prime Minister’s Questions on Wednesday. Ms Lockhart had previously raised the condition in the House of Commons before Teddy’s death. She told MPs he died last week. She said: “MLD is a horrendous condition that stole Teddy’s ability to walk, talk and even smile. “What makes this tragedy more profound is that here in the UK we have a treatment, we have a cure, but it’s only effective if the condition is identified by the simple heel prick at birth and treated immediately, because when symptoms appear, it’s too late.” She said: “Just a few weeks ago, the UK screening committee recommended it remain excluded from the heel prick. So we have a treatment, we have a commissioned service in Manchester Royal Children’s Hospital, but children like Teddy are still dying prematurely. “Prime Minister, despite all that’s going on the world, I know he is in politics to make a change – in Teddy’s memory and the memory of all those who have died prematurely, make the change and add MLD to the simple heel prick.” Sir Keir said: “I’m very saddened to hear of his passing, and I think my thoughts and I’m sure of the whole House are with his family, and his loved ones, and I will do precisely as she asks, I’ll make sure that we look at this again in light of the information she has now given to me in the course of this session.”
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