Newspaper article Evening Gazette (Middlesbrough, England)

Samuel's Illness Samuel's Illness Is So Severe, Is So Severe, Even Hugs Even Hugs from His from His Dad Cause Dad Cause Him Pain Him Pain; Bravery of Boy with Rare Disease

Newspaper article Evening Gazette (Middlesbrough, England)

Samuel's Illness Samuel's Illness Is So Severe, Is So Severe, Even Hugs Even Hugs from His from His Dad Cause Dad Cause Him Pain Him Pain; Bravery of Boy with Rare Disease

Article excerpt

Byline: SOPHIE BARLEY

CUDDLING and playing with your children are precious moments for every parent.

But for Ben and Donna Duley such loving contact can be more painful than pleasurable.

Their three-year-old son Samuel suffers from dystrophic epidermolysis bullosa (EB), a rare condition which causes his skin to blister and fall off.

He has to take care with movements as any slight friction, such as cuddles, could cause him to blister.

Ben, 33, from Grangefield, in Stockton, said: "It was something he was born with. When Donna was pregnant we didn't know he had it.

"But when he was born he had no skin on his feet. He was taken away for tests and we weren't allowed to hold him for 24 hours. We were told that he had dystrophic epidermolysis bullosa."

Incredibly both Ben and Donna, 32, are carriers of the rare condition -a fact they were unaware of until they had Samuel.

Ben, general manager of Gretna Green Hotel, in Newton Aycliffe, said: "The odds on me and Donna meeting and having a baby together and us both having this condition are apparently crazy. Doctors just couldn't believe it. We had no idea that we were carriers until we had to have tests done when Samuel was born. It was a huge shock."

Samuel, who goes to Whitehouse Primary School, in Stockton, has a younger sister, Lucy, 14 months. She does not suffer from the condition but is a carrier.

Ben said: "We had to take various tests when Donna was pregnant with Lucy to make sure she did not suffer from EB.

"We were told early in the pregnancy that she would not suffer from it but would, like us, be a carrier."

Samuel's condition is not the only heartbreak the family has suffered.

They had another little daughter, Amy. She died in 2004 after a battle with leukaemia.

Ben said: "Amy was a beautiful little girl. She was diagnosed with leukaemia when she was seven months old.

"There was hope for a long time that she would get through it but sadly it didn't happen.

"When Donna got pregnant again, it was like a miracle for us. Then obviously when Samuel was born we learned of his condition. What "We are like medical pros now. His condition is something we both now know everything about and have just come to deal with. He is our little fighter."

EPIDERMOLYSIS of conditions with the chemicals cement the layers Approximately have Dystrophic Dystrophic EB terms of severity, affects the arms One in 17,000 The approximate Around one in 17,000 babies is born with EB and it is estimated that there are around 5,000 people in the UK with the condition. for people with to 40 years.

As of yet there cure for EB. funds medical condition.

However dystrophic EB is one of the most severe cases of the disease.

The charity nurses their homes, such as computers * For details visit Samuel, who turns four at the end of this month, has two carers with him every day. …

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