Parents’ heartache as second child diagnosed with sunshine disorder

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THE family of a young girl diagnosed with a rare and incurable skin condition have been hit with further heartache.

Gillian and Bryan Chapman were devastated when their daughter Sarah was diagnosed with erythropoietic protoporphyria (EPP).

It means the seven-year-old has to be protected from the sun at all times, as even a few seconds in sunlight can cause her skin to swell and become unbearable.

Now, the family from Hardie Drive, in West Boldon, have been dealt another blow, after her younger brother Matthew, five, was diagnosed with the illness as well.

“It has been a big blow to us,” said Gillian.

“We had decided not to have Matthew tested for the condition after Sarah’s diagnosis, but he had been playing out one day and came in screaming and rubbing his hands.

“It was exactly what had happened with Sarah, so we took him to the RVI. He was tested and unfortunately it came back positive.

“We have taken it a lot calmer this time, as we’ve seen how Sarah has coped with it and how she does live a normal life as can be.

“And as Matthew is aware of the condition, because of Sarah, he knows what he has to do.”

The siblings, who both attend West Boldon Primary School, are believed to be only a handful of children in the UK diagnosed with the condition.

When they venture outside they have to wear a hat and gloves and protect their skin with sun block and an umbrella.

Gillian added: “The school has been really supportive, but I am really keen to raise awareness of the condition, so people understand why Sarah and now Matthew are dressed the way they are and why they are walking around with UV umbrellas.

“The past few days, with the weather being really hot, I have really felt for them.

“While everyone is walking around in summer dresses, they are having to wear their hats, gloves and coats.”

The family are in the process of organising fund-raising ventures in a bid to raise awareness of the condition.

EPP is thought to be caused by a faulty gene.

For more information about the condition visit www.porphyria.org.UK/

Twitter: @sunderlandecho