Grieving parents post video to raise awareness of disease that took their son’s life
PUBLISHED: 16:22 28 September 2017
ARCHANT EASTERN DAILY PRESS (01603) 772434
A mother who lost her baby to a rare genetic disease has posted a heart breaking video of baby James’ short life with his family.
Susie Ash and her fiancée Justin Thorndyke from Forncett St Mary near Diss have been to hell and back since their son was first diagnosed with severe combined immunodeficiency SCID.
And their grief since their son died in February has been harder to bear with the knowledge that a £2.50 simple heel prick test to detect SCID could have saved his life.
Their consultant, Professor Bobby Gaspar, from Great Ormond Street Hospital said screening that would have diagnosed baby James at birth meant he could have been successfully treated.
Following their son’s death the couple set up a petition to get the government to introduce SCID screening for newborns – it now has 23,000 signatures.
Professor Bobby Gaspar, who researched SCID and began a campaign five years ago, believes Susie and Justin’s SCID awareness campaign has helped bring the issue to the attention to the UK Screening Council.
Last month the council published its recommendations to carry out an evaluation study on whether to introduce the simple heel-prick test.
By posting the video of James’ difficult short life with his family, the grieving mother is highlighting what SCID sufferers and their families go through.
She hopes that her latest move will lead to more signatures for her petition to get the heel prick test added to newborn screening.
In just over two days the online video has had 3,500 views and many parents have contacted Ms Ash to thank her for raising their awareness of the disease.
She said: “It was a very hard thing to do – James was really poorly and the video shows some of his last moments.
“But it does show what he went through and how important newborn screening is.
“We have to keep the pressure on and not let this issue slip under the carpet.
“I hope it will spread far and wide to spread awareness of SCID.
“Many doctors have no awareness of SCID.
“I hope it will provide us with more people to support the petition to bring in newborn screening for SCID and save lives.”
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