independent

Sunday 20 April 2014

Santa Run to raise cash for little Sama

Sama Mulhern who suffers with a rare skin disorder.

THE PEOPLE OF CARLOW are rallying behind a young Carlow boy who suffers from a rare genetic skin disorder.

Six-year-old Sama Mulhern was born with a very rare genetic skin condition called Bullous Congenital Ichthyosiform Erythroderma. His skin grows twice as fast as anyone else's and also tends not to shed, which results in a ' traffic jam' effect of the skin on the top layers of his body.

According to his mum Ada, 'Sama rarely complains about the pain he feels on a daily basis due to the tightness of the skin especially around joints.

A friend of Ada's, Mary Curry, who works in Rathwood, suggested the 'Sama's Second Skin' campaign as one of the charties to benefit from the annual Santa Fun Run.

The 3km run or walk will take place on Sunday, November 11, around the forest at Rathwood with complimentary tea or coffee for all participants.

Sama's family are fundraising to raise money for stem cell research in to the illness and to care for his needs.

They flew out last year to America to meet with doctors about the disorder.

'We have to fly business class on long haul flights because Sama can't sit for long.

'We are trying to raise funds to continue to meet Sama's needs, for clothing and care, everything. He is wearing neoprene sandals at the moment. Last month he put on croc like shoes that he hadn't worn in a while and his feet became all blistered and sore.'

Sama's skin blisters really easily so minor trauma like wearing most shoes, or getting hit by a football or knocked into by another child at play can cause him lacerations on his body and leave him in severe pain and stinging when the air hits the open wound.

'Just last night he had a tough night and couldn't sleep because of the severity of his itching but this morning he is up and in great form like nothing is wrong,' said his mother Ada.

Sama, who is in senior infants at Educate Together, needs dressings and pain relief for his condition, he has to wear special clothing and shoes and has to have the blisters on his body lanced with a sterile needle on a regular basis.

'He is so so good, he tolerates it so well because he knows it will feel better soon after,' she added.

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