A Shocking Diagnosis for Young Albi

In a heartbreaking tale of parental love and resilience, Erin Ward and Calum Blackman, a couple from Bridgend, are coming to terms with the realities of their 20-month-old son Albi's rare genetic condition. Born with recessive dystrophic epidermolysis bullosa (RDEB), Albi’s skin is so fragile that even a gentle cuddle can result in severe tears and blisters.

The Everyday Struggles of Living with RDEB

This life-limiting condition doesn’t just stop at the surface; it deeply affects Albi's internal skin, causing his mouth and esophagus to blister, turning the simple act of eating into a painful ordeal. Currently, he relies on a feeding tube to sustain him.

Fragile as a Butterfly

Often referred to as 'butterfly children' due to the delicate nature of their skin, those like Albi face numerous challenges. "You would never believe that skin could be so fragile," says Erin, emphasizing how the slightest touch can inflict pain.

A Shattered Expectation

When Albi was born on August 19, 2021, the gravity of his condition became evident. His parents were devastated to learn that a simple skin condition was actually a severe and permanent diagnosis that would affect their child’s life profoundly.

Raising Awareness and Hope

The couple is committed to raising awareness about RDEB and fighting for a cure. Currently, Albi is participating in a groundbreaking stem cell clinical trial at Great Ormond Street Hospital, receiving infusions every two months in hopes of finding an effective treatment.

A Tireless Routine of Care

Erin and Calum dedicate countless hours to caring for Albi. Every day requires a meticulous routine of removing old bandages and applying new ones, a process that inflicts pain but is crucial for his protection and healing. "It takes up a lot of our morning, and it’s heartbreaking to see him in discomfort," Erin shares.

Facing Stigma and Raising Awareness

As Albi navigates his world, his parents face the challenge of public perception. They often receive curious glances and questions about his appearance. "It can be upsetting, but Albi is such a joyful child," Erin explains, underscoring the importance of educating others about his condition.

A Future of Hope

Despite the challenges, Erin and Calum remain hopeful. They wish to wrap Albi in cotton wool to shield him from harm, but they also strive to ensure he enjoys life to the fullest. The couple dreams of a day when a cure will be found, allowing their son to live without the relentless pain and limitations of his condition.

Albi’s Fight Continues

As Albi grows, his parents face the reality that healing may become more complicated, making their current efforts more vital than ever. They remain staunch advocates for their son, eager to spread awareness and support for families facing similar battles.