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Friday, 18 April 2014

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Barrow brothers keep smiling through ordeal of fragile skin condition

TWO young brothers from Barrow who have a rare and painful blistering skin condition have been nominated for a Christmas award.

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BRAVE BOYS Christmas Star nominees Cody-Jaxon, left, and Joby-Leigh Duncalf.

Joby-Leigh Duncalf, who is two at the end of the month, and his 14-month-old brother, Cody-Jaxon Duncalf, both have epidermolysis bullosa. The rare inherited skin disorder causes their skin to become very fragile and blister on the inside, as well as the outside. They are also allergic to the sun.

Both brothers were also born with complications that required bowel surgery.

The boys have to attend hospital in Birmingham every three months to monitor their condition.

Their mum, Jessica Deelay, 25, cares for the boys at home in Vulcan Road, Barrow.

There is a strict cleaning routine to keep the boys free of bacteria and prevent blisters. They also have to use special creams to protect their fragile skin, and have to have specialist bandages and plasters. Joby-Leigh and Cody-Jaxon also have to have their clothes changed up to four times a day.

Miss Deelay says the brothers are happy little boys, but understandably they get very upset when their condition flares up. When their feet blister they cannot walk and this is very frustrating and painful for them.

The boys have to wear clothes with tags inside out so they don’t irritate their skin; little trainers also cause blistering so they can’t be worn and they cannot go swimming because of the chlorine.

Cody-Jaxon has this week been in hospital for three days with a condition related to a possible dairy intolerance.

The boys were nominated to be Evening Mail Christmas Stars by their cousin Courtney Deelay, 15, a pupil at Furness Academy, in Barrow. She said: “My cousins mean a lot to me. They are always smiling and this makes me smile.

“I would be lost without them. They have a wonderful mum who looks after them 24/7.”

The Evening Mail has teamed up with Heath’s Toymaster in Barrow to find the area’s most inspirational boy and girl who have shown great courage or selflessness. Our Christmas Stars will win a visit from Father Christmas this week along with a host of festive gifts.

  • Christmas Stars nominations have now closed.
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