Manx landmarks such as the Tower of Refuge were illuminated bright red on Friday for vascular Ehlers Danlos Syndrome(vEDS) day.

It was a vivid display for a rare and life limiting condition, which affects 220 people in Britain. In it, malformation of collagen makes all tissues, arteries and internal organs extremely fragile and patients are at risk of sudden arterial or organ rupture.

Far less visible than this vivid light display are the symptoms of this complex disease. This creates different problems, said Port Erin woman Emma Watterson whose daughter Levi-Rose was diagnosed in September 2017.

Apart from very flexible thumbs (severe hyper mobility as part of her vEDS), Levi-Rose looks like any normal, bright-eyed three-year-old.

But she bruises very easily and the condition leads to chronic fatigue. The increased risk of bleeding and damage to her organs means Emma must be very vigilant and protective of her little girl.

The bruising made Emma ’completely paranoid’ before Levi-Rose received her diagnosis.

Undiagnosed vEDS has led to arrests in the UK. In a high profile case last year a baby girl was removed for eight months from her parents Craig Stillwell and Carla Andrews after he was accused of shaking baby Effie, causing bleeding. They were exonerated after Effie was diagnosed.

Awareness is critical for sufferer and carer and Emma is involved in the charity Annabelle’s Challenge, committed to raising awareness and funds for research. The charity is the beneficiary from last Friday’s activities, called REDS4VEDS Day.

Diagnosis is very hard to hear, but no diagnosis with the knowledge something is deeply wrong is even harder, said Emma. The first red flag was that Levi-Rose was born with a club foot, which is rare for a girl.

’When she was a baby and you picked her up she was loose,’ said Emma. ’We knew there was something wrong, and she had developmental delays. After nine months we went to a dietician, they gave us an urgent referral to neuro-surgery. We went to Alder Hey and the condition they thought she had they ruled out.’

They were given a presumptive diagnosis of vEDS in March 2016.

’They have to be medically treated differently, no long flights and no bouncy castles. Stitches have to be looser. There is a 70% chance of them surviving an anaesthetic.’

The 32-year-old knows she won’t have a job (she had ambitions of working with children in care or as a lawyer) so has thrown herself into caring for her daughters (with respite care from Rebecca House) and hopes to establish a branch of the charity in the island. Levi- Rose is the only known sufferer here but there could be more undiagnosed. Meanwhile with the ultimate wish for a cure, Emma has honed an admirably philosophical approach to the disease and its impact.

’We are blessed,’ she said. ’We have the NHS, we have a government that will pay for us to go across, we have a benefits system which allows me to look after her. She has a quality of life.

’Every time something comes up I think: "I can deal with it". You have to make the best of a bad situation.’