TONDU, BRIDGEND – A couple from Tondu in Bridgend, Erin and Calum, are facing a heartbreaking challenge as their son, Albi, battles a rare genetic skin condition known as recessive dystrophic epidermolysis bullosa (RDEB). At just twenty months old, Albi’s skin is extremely fragile, causing it to blister and tear with the slightest touch, and making internal functions such as eating and swallowing painful. This condition, which affects his skin from head to toe, is not only physically painful for Albi but also emotionally taxing for his parents.
Since Albi’s birth in 2023, his parents have been on a rollercoaster of emotions and challenges. Initially, doctors were puzzled by the missing skin on Albi’s right leg, left foot, and hands but after consulting with experts at Great Ormond Street Hospital in London, the diagnosis of RDEB was confirmed. This diagnosis comes with the harsh reality that there is yet no cure for this life-limiting condition.
Erin and Calum, who themselves are silent carriers of the gene that causes RDEB, have had to learn to navigate the daily struggles of caring for Albi. They spend hours each day changing his bandages and ensuring that his fragile skin is protected. This daily routine is not only painful for Albi but also emotionally draining for his parents.
Despite the challenges they face, Erin and Calum remain hopeful for a cure for Albi’s condition. Albi is part of a stem cell clinical trial at Great Ormond Street Hospital, giving his parents hope for a brighter future for their son. The couple is also dedicated to raising awareness about RDEB, ensuring that people understand the struggles faced by those living with this rare skin condition.
Living with RDEB means that Albi’s daily life is filled with challenges that most people could never imagine. From the pain of eating and swallowing to the constant fear of his sensitive skin tearing, Albi’s journey is one of immense strength and resilience. As his parents continue to advocate for him and support him in every way possible, they hope for a future where Albi can live a pain-free and fulfilling life, free from the constraints of his condition.
Through their strength, determination, and unwavering love for their son, Erin and Calum are not only fighting for Albi but also raising awareness about the realities of living with RDEB. Their journey is one of love, hope, and resilience in the face of unimaginable challenges, serving as an inspiration for all who hear their story.