Ehlers-Danlos Syndrome: 'She's living through a nightmare'

Jenny Rowbory spends her days staring at the ceiling - a genetic condition has left her unable to move her head.

Her parents, Ian and Ann care for their daughter around the clock at their home in a rural village in Gwynedd, north Wales.

Jenny was diagnosed with vascular Ehlers-Danlos syndrome, external in 2015.

The genetic disorder means her body produces faulty collagen, a protein that is a vital building block of supporting connective tissue, such as ligaments and tendons.

It can lead to overly flexible joints, skin conditions and, in rare cases such as Jenny's, fragile blood vessels.

Instability in Jenny's neck became life-threatening in 2020 and she had an operation to fuse bones in place, but it was not a success.

She has been left unable to move her head for fear of risking more damage or reducing blood flow.

Her parents hope neurosurgery in the USA could help but it would cost £750,000.

Ann said: “To know there’s this neurosurgeon out there who’s got the experiences to help her and not to have the money to be able to get her there – it’s so frustrating.”