MP backs Norfolk mum and popstar Jesy Nelson in campaign for newborn screening |
Leah Scott's young daughter Paige died from a rare genetic disease, which can be treated if caught early enough.
As part of her push for a review of how many conditions babies are tested for using the heel-prick blood test, routinely done shortly after birth, she met with Waveney Valley MP Adrian Ramsay.
MP Adrian Ramsay is backing Norfolk mum Leah Scott (Image: James Manning/PA Wire)
Following the meeting, Mr Ramsay told her he was" deeply moved" by what he heard and has pledged to ask questions in Parliament about whether more rare but treatable conditions should be added to the UK newborn screening programme.
Mr Ramsay said: "What happened to Paige was a preventable tragedy. If the right testing had been put in place, it could have been avoided. The campaign has my full support.
"I will be taking the case up with the minister and working with the Scott family and then the campaign group to best advocate for a change in policy."
Mrs Scott is campaigning for the inclusion of metachromatic leukodystrophy (MLD), a rare inherited condition affecting the nervous system.
While devastating if left untreated, new gene therapies mean outcomes can be dramatically improved if the disease is identified before symptoms develop.
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