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Like any five-year-old, Tirion 'Tiri' Griffiths loves riding her bike and playing with her dolls.
But the young schoolgirl, from New Zealand, can only play indoors with the sun completely blocked out because she suffers from an extremely rare reaction to UV light.
Exposure - Reddening - Blistering - Skin - Home
Any exposure can cause immediate reddening and blistering to her delicate skin, leaving her confined to her home amid fear of a 'burning sensation'.
She must be fully clothed from head to her toes at all times, as the inflammation can last from hours up to weeks with no effective pain relief available.
'Every - Time - Fire - Mother - Gemma
'Every time she went outside, she would scream that she was on fire,' her mother Gemma Griffiths, 44, told Daily Mail Australia.
'Normally, she starts with a flaming sensation before she forms very large blisters, which can tear her skin. There's no pain medication, the only real relief is water.'
Tiri - Month - Protoporphyria - EPP - Disorder
Tiri was officially diagnosed last month with erythropoietic protoporphyria (EPP) - a disorder that affects oxygen in the blood, making sufferers allergic to the sun.
She's allergic to visible light, including sunlight, light coming through the window - and even light bulbs.
'It - Spectrum - Bulbs - House - Light
'It's a certain light spectrum. We've changed all our bulbs in the house so there's no visible blue light in it, now she can run around the house,' Mrs Griffiths said.
'Her condition can be fatal over the course of time. It depends on the intensity of light. Her skin can blister quite quickly and it can get infected, or damage her liver. We try not to let this happen, we keep her safe as much as we can.
Parent - Nightmare - Five-year-old - Everyone - Else
'Deep down inside it's every parent's worst nightmare. But we just accept her for who she is. She's a bubbly five-year-old who has to live slightly different to everyone else.'
The condition causes Tiri to become extremely photo sensitive to light, and...
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