SUNSHINE means nothing but pain for little Sarah Chapman.
Six-year-old Sarah suffers from a rare and incurable form of the skin condition porphyria, which means she has to wear protection at all times from the sun.
Even a few seconds in sunlight can cause Sarah’s skin to swell and become unbearably painful.
Sarah, who is believed to be one of only a handful of children in the UK diagnosed with Erythropoietic Protoporphyria (EPP), has to wear a hat and gloves, protect her skin with sun block and even use an umbrella when she ventures outdoors.
Unlike most little girls, she prefers overcast, rainy days, which keep her safe from sunlight, calling them “Sarah’s weather”.
Despite her incurable condition, the West Boldon Primary School pupil has a bubbly personality and lives life to the full – battling daily against her painful skin condition.
Her parents, Gillian and Bryan Chapman, of Hardie Drive, West Boldon, are aiming to increase awareness of EPP.
Mr Chapman recently helped boost the research into the condition by the British Porphyria Association.
He took part in the Coast to Coast cycle ride – but injury has ruled him out of the Great North Run on Sunday.
Sarah’s parents realised something was seriously wrong when her hands suddenly swelled up three years ago.
Mrs Chapman said: “Sarah’s hands become swollen into the shape of a claw and we took her to South Tyneside District Hospital, where she underwent tests.
“She was transferred to Newcastle’s Royal Victoria Infirmary, where the doctors at first thought she had an allergy to something.”
Before she was diagnosed with EPP, Sarah’s hands and face again became swollen during a family holiday in Wales.
More tests followed at the RVI and the family kept a diary of Sarah’s symptoms, before she was finally diagnosed with EPP last summer.
Mrs Chapman said: “It’s really sad when the rest of the family is out sunbathing and enjoying the sun, and Sarah cannot join in.
“But she knows how she can suffer in sunlight and will say, ‘I don’t want that, Mammy!
“So holidays in hot countries abroad are a no-no and apart from her hat, gloves, umbrella and sun block, we even have the windows of the car protected, in case the rays of the sun affect Sarah’s skin.”
EPP is thought to be caused by a faulty gene, and Mrs Chapman adding: “It’s thought that Bryan and I both have the faulty gene, which has caused Sarah’s condition, which has not affected our other children, Matthew, four, and nine-year-old Rebecca.
“A lot of research is taking place in the U.S. into porphyria and EPP and we would like to increase awareness of the condition in this country and help to raise money for research.”
Anyone wishing to support the family’s fundraising efforts should visit the charity link at http://www.justgiving.com/Bryan-ChapmanO
More information about the condition is available at the website of the British Porphyria Association at http://www.porphyria.org.UK/