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£2.50 test that could have saved baby James a step closer after national pilot approved

PUBLISHED: 15:40 13 December 2017 | UPDATED: 15:45 13 December 2017

James Thorndyke died earlier this year just before his 1st birthday following a battle with SCID. Picture: Thorndyke family

James Thorndyke died earlier this year just before his 1st birthday following a battle with SCID. Picture: Thorndyke family

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A couple’s campaign for a simple £2.50 screening test that could have saved their baby’s life has got a major boost after being confirmed for a UK-wide pilot.

Baby James in hospital. Picture: Thorndyke family..Baby James in hospital. Picture: Thorndyke family..

Susie Ash and her fiancée Justin Thorndyke, from Forncett St Mary near Diss, began the campaign after their son James Thorndyke died in February this year from severe combined immunodeficiency (SCID).

After learning a £2.50 simple heel prick test to detect the condition could have saved his life, the couple have been calling along with their consultant, Professor Bobby Gaspar from Great Ormond Street Hospital, to begin national screenings from birth.

Following their son’s death, the couple set up a petition to get the government to introduce SCID screening for newborns - which was approved for a national pilot on Wednesday, December 6 by the Newborn Screening Committee.

Ms Ash said: “I had never heard of SCID before James’ was diagnosed.

James with mother Susie Ash. Picture: Thorndyke familyJames with mother Susie Ash. Picture: Thorndyke family

“I joined the campaign to try and get the test included the screening programme, as it already being done in other countries.

“After six years of research by Prof Gaspar, we joined the campaign and now the committee have agreed to do pilot screenings across the country.”

The couple have had the chance to tell the country James’ story after they appeared on The One Show on Wednesday, December 13.

Ms Ash added: “This is a massive step forward for the campaign but we still need to keep the pressure on, as it is easy for these things to be swept under the carpet. We need to keep it highlighted and it is really good The One Show have shared our story.

Baby James in hospital. Picture: Thorndyke family.Baby James in hospital. Picture: Thorndyke family.

“The £2.50 test can be done through same heel prick sample which is taken at birth. It was devastating to know that the test couldn’t be done for James. But by putting our story out there, I hope it lets people know that this is a test our children should be having.”

In September the couple released a video of James’ short life to raise awareness of the condition.

Professor Gaspar hopes that the testing will be kept on nationally after the two-year pilot.

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