A mum from Rochdale, who was forced to spend almost £500,000 on surgery to save her life, is today launching a charity focused on her rare condition.
Samantha Smith endured traumatic operations in the United States to restructure her neck, which had been weakened by Ehlers-Danlos Syndrome. The surgery was not available on the NHS.
The EDS Foundation will "raise a flag," she says, for those living with the syndrome across the country.
- Our Correspondent, Tim Scott has this report: