Epidermolysis bullosa: Ten-month-old baby's 'butterfly' skin is so fragile he can be hurt by a gust of wind

Warning: Story and video contain images and descriptions of open wounds, which may be distressing.

A baby with skin as delicate as a butterfly's wing is so fragile even a gust of wind could hurt him, as his parents and loved ones prepare to walk for a cure.

Little Abe Hersham, 10 months, suffers from epidermolysis bullosa (EB) - an incurable and degenerative genetic skin condition which causes internal and external blisters at the slightest friction. His condition is so severe that if the wind blows in the wrong direction, he could get a wound on the cornea of his eyes - which could cause vision loss - and his parents have to bathe in him bleach to sterilise his wounds and prevent them getting infected.

Alex, 37, and Natasha, 29, a stay-at-home mum, have to replace his bandages twice a day to make sure everything is ok. But Alex, a business director from Westminster, London, said the tyke finds happiness and joy in everything. "He is extremely resilient. He inspires us every day - it has been hard but at the same time we have a beautiful boy who is inspirational."

The couple were surprised when their baby was born with wounds all over his body, on 9 April last year. Alex told SWNS: "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.'"

Alex and Natasha had not heard of the disease until an hour after Abe was born, but say their tot's condition was apparent from birth. "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."

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.

Alex and Natasha 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 - and his parents are full of praise for his 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," he said. "I am learning about perseverance, and patience as well."

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 16 March, 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.

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, and 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."