Baby's rare condition makes skin so fragile even a gust of wind could hurt him
A baby boy's skin is so delicate that even a gust of wind could hurt him, his parents have said.
Abe Hersham, who is just 10 months old, has a rare and incurable skin condition called epidermolysis bullosa (EB). The condition causes blisters both inside and outside his body with the slightest touch. His health condition is so severe that if the wind blows in the wrong direction, it could wound the cornea of his eyes, which might lead to loss of sight.
His mum and dad, Alex, 37, and Natasha, 29, have to change his bandages twice a day and give him baths in bleach to keep his wounds clean and stop them from getting infected. Alex, who works as a business director in the City of Westminster, said: "We have been blessed to have a baby he has been amazing."
"He finds happiness and joy he is extremely resilient. It has been traumatic and sad in the same way - we are pulling together as a family. He inspires us every day - it has been hard but at the same time we have a beautiful boy who is inspirational. We are pulling together."
The couple were taken aback when their baby was born with wounds all over his body on April 9 last year. Alex said: "It was a huge shock to us and the genetic tests that we did before he was born didn't include the EB that our son has. I remember one doctor telling me: 'Go home, your baby is perfectly healthy stop worrying.'"
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Alex and Natasha had never heard of the disease until an hour after Abe was born, but they say their tot's condition was obvious from the moment he was born. Natasha said: "He was born with no skin on his left leg from the thigh downwards to the toes. He was born with no skin on his chest, no skin on both hands."
The 10-month-old baby has epidermolysis bullosa (EB) - an incurable and degenerative genetic skin condition (Alex Hersham / SWNS)As well as causing external wounds, EB can also result in internal complications, affecting the throat, mouth and oesophagus. This means Abe - who is fed through a tube - will have to have a soft diet his whole life.
"It's so difficult to give him the right amount of calories because with so many open wounds he needs way more than a normal kid," Alex said. The couple have become accustomed to Abe's daily routine and the level of treatment he requires. Every other day, the baby's dressings are changed, which can take up to two hours, and he has to have a bath in bleach as so many open wounds make them prone to infection.
"Bleach baths are a thing most EB patients have to do," Alex said. "It's not too painful - it can sting if a wound is very new, but Abe has an incredible pain threshold and strength that I am in awe of."
Despite the complications of living with his condition, Abe remains cheerful, and even enjoys listening to string orchestra. World Health Organisation said: "He's a Vivaldi enthusiast. We're starting to get to know his personality. His night-time song, which gets him to sleep within seconds, is Vivaldi's Four Seasons Winter. That's like his song."
A gust of wind could hurt the tot due to the nature of the complaint (Alex Hersham / SWNS)
Natasha and Alex, who is pictured holding his son, are fundraising and raising awareness (Alex Hersham / SWNS)Alex and Natasha are full of praise for Abe's indomitable spirit. Alex said: "We just make the best of it and he, despite everything, has this unwavering drive to have a good time, to bounce back even if it is painful. We have already learned so much from him, even in just the 10 months that he has been with us. I am learning about perseverance, and patience as well because dressing changes take such a long time."
In order to raise money for a charity called cure EB, Alex and Natasha - along with 20 to 25 of their closest friends and family - will be walking 100km, the equivalent of two-and-a-half marathons, in a single day.
The walk will take place on March 16 and will take around 24 hours. The couple have so far raised upwards of £315k for Cure EB, a charity set up to find effective treatments and a cure for the condition, which would be life-changing for children like Abe.
You can donate here: 100km Walk for EB. For people suffering with the condition, the future is uncertain as it is a degenerative, progressive disease. Life expectancy for those with the condition is currently around 40 years old.
EB can eventually lead to an aggressive form of skin cancer. Alex said: "That's what the future currently holds, and that's why we're fighting so hard not just for our son but for every EB child because they deserve it."
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