November 11, 2023 9.00 am This story is over 10 months old

Lincolnshire family’s plea for NHS access to crucial cystic fibrosis drug

The Thomas family’s journey: From diagnosis to a fight for treatment

In a quiet corner of Lincolnshire, a mother’s heartache echoes as she grapples with the harrowing reality that her baby daughter, battling cystic fibrosis, might be denied access to life-saving drug Orkambi on the NHS.

Nurse Steph Thomas, 32, and her husband Brad, 33, welcomed Neave into the world on December 29, 2022. A prenatal scan at 17 weeks revealed Neave’s echogenic bowel, a possible indicator of cystic fibrosis, a diagnosis confirmed with tests after her birth.


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