A Bradford mum has said she feels “ridiculously lucky” after a chance participation in a medical study found her two sons had a genetic change linked to a rare condition.
Jessica Barker-Roe said she had agreed for her youngest son to take part in the Generation Study – run by Genomics England and the NHS – when she was “bored” during a stay in hospital.
It found her boys Revan and Thorin had adrenoleukodystrophy, also known as ALD, which affects the adrenal glands and nerves of the spinal cord – but careful monitoring should mean they avoid life-limiting complications.
The Generation Study is screening 100,000 newborn babies in England for dozens of genetic conditions.
Jessica, 32, said she first heard about the study during a long stint in hospital while pregnant with Revan, who is now eight months old.
“The research midwives were just making their way around and chatting to patients, they asked me if I would be interested in signing up to the Generation Study,” she said.
“Honestly I was just bored so I said, ‘Yeah, whatever’ and put it to the back of my mind.”
