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Meet the ‘butterfly’ boy whose skin tears from the slightest touch – Splitting after playing with toys, eating and even being picked up by his parents

BY NICOLAS FERNANDES Meet the ‘butterfly’ boy whose skin tears from the slightest touch – splitting after playing with toys, eating and even being picked up by his parents. Hayden Esser, two, of Sedalia, Missouri, USA, suffers from Dystrophic Epidermolysis Bullosa (EB), a genetic disorder that causes fragile, blistering skin. The boy’s skin tears from everyday touches such as playing with his toy car, being picked up by his parents, getting dressed and even eating. His father Brandon, 36, spends an hour and a half wrapping Hayden in bandages every morning to cover up the blisters and protect him from further injuries. Most foods cause damage to his throat and esophagus, needing the two-stone (28-pound) toddler to get his nutrients from baby formula and make up for lost calories with chewy cookies and mashed potatoes. But even holding the bottle to drink the formula causes his hands to blister. His skin is even more sensitive in the heat, which is why his family sets the temperate in the house to 20 degrees (69 F) and avoids bringing him outdoors during the summer months. Despite the severity of the blistering, Hayden stays happy and positive for the most part. Brandon, who left his job as an auto parts manager to care for him, said: “He’ll be playing with a small toy and all of a sudden, the skin will come off his hands. “Sometimes his skin will tear just from me picking him up. “Eating is a big problem. He has to stay away from most foods because they tear up his esophagus. “I spend an hour and a half removing his bandages and putting on new ones every day. Sometimes it’s hard to get him to sit for that long because he’s only two years old. “The doctor has said that he is getting all of the nutrients with the formula and that he is at a healthy weight. “We are going to let him decide if he wants to start eating more foods, but if he damages his esophagus too much, it will need to be dilated. “His skin gets so sensitive in the heat, that we have to always keep the temperature in the house cool and can only bring him outside early in the morning or late at night in the summer. “He’s one strong kid. He has a smile on his face every day, with the exception of when something out of the ordinary happens.” Looking at the years ahead, Brandon wonders if it will be possible for his son to attend school. Him and his wife Nicole, 29, are going to try sending the toddler to pre-K next year, but understand that homeschooling might be necessary. The father said: “He hasn’t gone to school yet, so we’ll have to see if it’s something he can do. “We want him to be able to join in with all the other kids, but if it winds up being too dangerous we’ll have to take him out." Something else the parents are prepared for is the worsening of Hayden’s condition that comes with an average life expectancy of 30. They expect that as he gets older his fingers and toes will fuse together, a symptom that occurs later on in an EB patient’s life. Brandon anticipates that him and his wife will have to care for the toddler for the rest of his life. He said: “He’s most likely going to wind up in a wheelchair and require full-time care. “While I do want him to outlive us, I don’t know who would be around to continue caring for him.” Dr. Lara Wine Lee of the Medical University of South Carolina, says the condition causes limited life expectancy and reduces a person’s quality of life. The dermatologist said: “It can shorten lifespan and diminish the quality of life in every way possible. It can cause a lot of pain and a lot of troubles with movement, especially with eating. “It is very difficult for them to be independent. They usually need a lot of help with bandage wrapping and feeding themselves.” She added: “There is no cure, but there are a wide range of wound care treatments available. “There is a lot of research going on and doctors are working towards clinical trials. We’re definitely closer than we’ve ever been to finding more treatments and products that will improve wound healing.”
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