Mum welcomes a study anounced into £2.50 test that could have saved her baby’s life

Mother Susie Ash with her son James. Picture: Susie Ash and Justin Thorndyke

Mother Susie Ash with her son James. Picture: Susie Ash and Justin Thorndyke - Credit: Archant

A couple's campaign for a simple £2.50 screening test that could have saved their baby's life has been given a boost after a government committee recommended an evaluation study into the move.

Susie Ash and her fiancé Justin Thorndyke, from Forncett St Mary, near Diss, have gone through unimaginable grief since the death of their son, James, from Severe Combined Immunodeficiency (SCID) - a rare genetic disease - just before his first birthday.

Their loss was made even more difficult with the knowledge that a simple heel-prick test to detect SCID could have saved their son's life.

Professor Bobby Gaspar, from Great Ormond Street Hospital, said screening would have diagnosed James at birth and meant he could have been successfully treated for the condition.

The UK Screening Council has now published its recommendations to carry out an evaluation study on whether to introduce the simple heel-prick test that detects SCID.

Although the campaigning couple would have preferred to hear that the test had been given the go-ahead nationally, they see the latest development as a start.

'I know today's news is a good outcome but ideally we wanted the test to be put out nationally,' said Ms Ash.

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'But at least they are doing something - it's a start.

'We have to keep going, we have to keep campaigning and raising awareness.'

Professor Bobby Gaspar, who researched SCID and began a campaign five years ago, is delighted by the UK Screening Council's decision.

He believes that the couple's awareness-raising campaign has helped bring the issue to the attention of the screening body.

'I want to say a big thank you to Susie and Justin for the fantastic work they have done in highlighting this issue,' he said.

'If you look at what has happened with national screening programmes, there has always been an evaluation study of some sort.

'So I would be hopeful that this will lead to a national screening programme.

'I was very pleased that they were not asking for more information - they actually want to do something and screen babies.

'The important thing is to get the evaluation study up and running as soon as possible.'

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