A couple from Bridgend, Wales, are grappling with the heartbreaking reality that their 20-month-old son, Albi, has a rare genetic skin disorder that makes even the gentlest touch dangerous. Albi suffers from recessive dystrophic epidermolysis bullosa (RDEB), a severe condition that causes his skin to tear or blister at the slightest friction.
The condition, which also affects his internal skin, causes painful blisters in his mouth and esophagus, making eating and swallowing difficult. As a result, Albi is fed through a tube.
His parents, Erin Ward, 23, and Calum Blackman, 26, are desperately hoping for a cure as their son endures constant pain. “You would never believe that skin could be so fragile, and just cuddling your child could tear their skin,” said Ms. Ward.
Albi was born on August 19, 2023, and doctors at Princess of Wales Hospital in Bridgend quickly noticed areas of missing skin on his right leg, left foot, and hands. Initially, doctors thought Albi might have rubbed his legs together in the womb, causing the skin to come off. However, after consulting experts at Great Ormond Street Hospital in London, RDEB was diagnosed.
“It’s not just a skin condition; it’s a life-limiting condition,” said Mr. Blackman. “It’s a hard-hitting diagnosis to receive.”
Albi’s condition stems from a lack of type seven collagen, a protein that helps hold skin to the body. Without it, the slightest friction causes blisters, leaving him in constant discomfort.
Ms. Ward and Mr. Blackman spend hours each day changing Albi’s bandages, which cover him from his neck to his toes. The process is painful for Albi, and although he is prescribed painkillers, they often don’t provide enough relief.
“It depends on Albi—how long it takes and how painful it is for him. We have to be thorough, so it takes up a lot of the morning,” said Ms. Ward.
The bandages not only help heal his skin but also provide protection against further damage. “It means he can play with extra padding to protect him and reduce friction,” she explained. “These bandages are a must—every day, for the rest of his life.”
People with EB, often referred to as “butterfly children,” have skin as fragile as a butterfly’s wings. At first, Ms. Ward was too scared to hold her newborn son. “We would carry him around on a pillow with silk sheets. We didn’t let anyone hold him. We were terrified of anything happening to him,” she recalled.
However, as they spent more time with him, they grew confident in caring for Albi, learning how to handle their son without causing harm.
“It’s all about him,” Ms. Ward added. “People might stare or ask what happened to him, but Albi is such a happy child, and I want people to understand.”
Roughly 5,000 people in the UK are living with epidermolysis bullosa, a condition that both Ms. Ward and Mr. Blackman unknowingly carried as silent genetic carriers.
“It’s heartbreaking when you see someone try to interact with him, or when another child wants to play. You fear they might hurt him, and it could take weeks for him to recover,” said Mr. Blackman.
Ms. Ward has made it her mission to educate others about Albi’s condition. “When people see him covered in bandages, they often ask if he’s been in an accident. I understand their curiosity, but it’s tough and upsetting at times,” she said.
Albi is currently participating in a clinical trial at Great Ormond Street Hospital, called the Rhea Cell stem cell trial, and undergoes infusions every two months in hopes of finding a cure.
While Albi is healing well for now, his parents fear that his condition could worsen as he grows. “When he gets older, his body might start to slow down. A wound that now heals in two weeks could take months, or not heal at all,” Ms. Ward explained.
As Albi gets older, his parents are concerned about complications such as limited mobility, with many EB patients eventually needing wheelchairs due to painful blisters on their feet. Additionally, fingers can fuse together, and they are closely monitoring Albi’s hands.
“We wish we could wrap him in cotton wool to protect him, but we want him to have a fun and fulfilling life too,” said Ms. Ward.
Through their own experiences, Erin and Calum continue to raise awareness and hope for better treatments for their son and others living with EB.
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