A couple whose son has a rare genetic skin condition say it is hard to process that a cuddle could "tear his skin". Twenty month old Albi was born with a severe form of recessive dystrophic epidermolysis bullosa (RDEB), a disorder which causes his skin to break out in blisters or tear with the slightest friction. It also affects his internal skin, causing his mouth and oesophagus to blister and making eating and swallowing painful. He is fed through a tube into his stomach as a result. Albi's parents Erin Ward, 23, and Calum Blackman, 26, from Tondu in Bridgend, are hoping a cure can be found for their son, who lives in pain every day. Warning: Contains images some people may find upsetting. "You would never believe that skin could be so fragile and just cuddling your child could tear their skin," said Ms Ward. When Albi was born on 19 August 2023, doctors at the Princess of Wales Hospital in Bridgend knew that something was wrong when they saw that skin was missing from his right leg, left foot and hands. Ms Ward said doctors initially thought Albi could have rubbed his legs together while in the womb and removed the skin. But after speaking to medical experts at Great Ormond Street Hospital in London, RDEB was diagnosed. "Not only is that a skin diagnosis, it is also a life-limiting diagnosis," said Mr Blackman. "It's a hard-hitting diagnosis to receive." Source:Great Ormond Street Hospital "[Albi] is missing type seven collagen which is a protein which basically glues his skin to his body, so in Albi's case the slightest bit of friction will cause his skin to blister," said Ms Ward. The couple spend two hours removing Albi's old bandages and applying new ones every day. It is a painful process for Albi and he is prescribed painkillers, but his Mum said they were often not strong enough. "It all depends on Albi on how long it takes though because it's really painful for him, we have to be thorough, so it does take up a lot of the morning. " The bandages which cover him from his neck to his toes help to heal his skin and also offer a layer of protection. "It means he can play and he has that extra padding to protect him and reduce the friction," she said. "It means bandages every day for the rest of his life - they're a must." Young people with EB are sometimes called "butterfly children" because their skin is fragile, like a butterfly's wing. Ms Ward, who runs a nail and beauty business, said she was too scared to hold Albi when he was first born. "We would carry him around on a pillow with silk sheets. "We didn't let anyone hold him and we were so scared of anything happening to him. "[But] the more time we spent with him the more confident we got and we became experts in how to hold our own child." It is estimated that more than 5,000 people are living with EB in the UK. Both Ms Ward and Mr Blackman were silent carriers of the gene. "Your stomach drops when you see someone trying to interact with him, or another child wanting to play, " said Mr Blackman. "You have a fear are they going to hurt him and will it take weeks for him to recover if they do hurt him. " Ms Ward said she needed to educate people about Albi's condition wherever she goes. "We tend to get a lot of looks from people, they'll say 'what's happened to him, has he been in the wars?' "I understand, because you don't normally see a baby with wounds on his face and covered in bandages. "It can be tough and upsetting, but Albi is such a happy child and I think it's not about me, it's about him." Albi is part of a stem cell clinical trial at Great Ormond Street Hospital called Rhea Cell, and he undergoes infusions every two months. His parents are hoping a cure will be found in the future and are raising awareness of the condition. "At the moment Albi heals quickly but when he gets older his body might start slowing down, so now a wound which heals in two weeks could take a few months to heal or not at all," said Ms Ward. "Many with EB rely on a wheelchair to get about because of the blisters on their feet because it becomes too painful to walk and sometimes fingers can fuse together so we have to keep an eye on his hands. "We wish we could wrap him cotton wool all over to protect him but we want him to have fun and live his life too."
'A cuddle could tear my son's skin'
TruthLens AI Suggested Headline:
"Parents Advocate for Awareness of Son's Rare Skin Condition"
Bbc News
5.8
TruthLens AI Summary
Albi, a 20-month-old boy from Bridgend, is suffering from a severe form of recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic skin condition that causes his skin to be extremely fragile, resulting in blisters and tears from even the slightest friction. This disorder not only affects his external skin but also impacts his internal skin, leading to painful blisters in his mouth and esophagus, which complicates his ability to eat and swallow. As a result, Albi relies on a feeding tube for nutrition. His parents, Erin Ward and Calum Blackman, are struggling with the emotional and physical challenges posed by their son's condition, which was diagnosed after doctors noticed missing skin on his body at birth. They describe the diagnosis as life-limiting and have become increasingly aware of the need for public education regarding Albi's condition, which is often misunderstood by others who see his bandaged appearance.
The daily care routine for Albi is both time-consuming and painful. His parents spend up to two hours each day changing his bandages, which are essential for protecting his skin and aiding in healing. Despite the pain associated with this process, they remain committed to ensuring that Albi can have a fulfilling life. They have learned to manage his condition with care, but they still face fears about his interactions with other children and the potential for injury. Albi is currently participating in a clinical trial for a stem cell treatment that offers hope for a better future. His parents are determined to raise awareness about RDEB and advocate for better understanding and support for children like Albi, while also cherishing the joy and happiness he brings into their lives.
TruthLens AI Analysis
The article presents a heart-wrenching story of a young child suffering from a rare genetic skin condition, focusing on the challenges faced by his family. The emotional weight of the narrative and the vivid descriptions of the child's pain aim to evoke empathy and awareness regarding rare diseases, particularly recessive dystrophic epidermolysis bullosa (RDEB).
Purpose of the Article
The primary intention appears to be raising awareness about RDEB and the daily struggles of those affected by it. By sharing personal experiences and highlighting the fragility of the child's condition, the article seeks to educate the public on the realities of living with such a disorder. This can foster a sense of urgency regarding medical research and support for families dealing with similar conditions.
Public Perception
The article is likely designed to generate a sympathetic response from readers. The portrayal of the child's suffering, combined with the parents' emotional statements, aims to create a visceral reaction that compels the community to engage with the issue. It underscores the notion of parental love and the profound impact of a child's health on family dynamics.
Hidden Aspects
While the article focuses on the child's condition and parental struggles, it may inadvertently gloss over broader systemic issues in healthcare, such as access to treatment or the need for more funding for rare disease research. This selective focus can lead to a narrow understanding of the challenges faced not just by this family but by many others in similar situations.
Manipulative Elements
In terms of manipulation, the article uses emotionally charged language and imagery to influence readers' feelings. By emphasizing the physical pain and emotional distress of Albi and his family, the narrative may steer public opinion towards a demand for more support and resources for rare diseases. However, this emotional appeal, while powerful, can overshadow critical discussions about healthcare policies or the need for scientific advancements.
Comparative Context
When compared to other health-related articles, this piece stands out due to its personal narrative style, which is often more engaging than dry statistics or clinical descriptions. It connects readers more intimately to the subject matter, making it a compelling read that could foster community action or support.
Impact on Society and Economy
The story may motivate local communities to initiate fundraising efforts or support organizations focused on rare diseases. On a broader scale, it could influence policymakers to allocate more resources towards research and treatment options for conditions like RDEB, potentially shifting healthcare priorities.
Supportive Communities
This article is likely to resonate with communities advocating for disability rights, healthcare access, and rare disease awareness. It appeals to those who empathize with the challenges faced by families dealing with chronic illnesses.
Market Impact
From a financial perspective, the article may indirectly impact pharmaceutical companies involved in developing treatments for rare diseases. Increased public awareness could lead to higher investment or interest in research and development for such conditions.
Geopolitical Relevance
While the article primarily focuses on a personal story, it touches on broader themes of healthcare equity, which are relevant in discussions around global health access and the distribution of medical resources.
Use of AI in Article Composition
It is unlikely that AI played a significant role in the writing of this article, given its emotional depth and personal anecdotes. AI might have been used in drafting or editing, but the nuanced storytelling suggests human involvement to convey the complexity of the family's experience.
Trustworthiness of the Article
The narrative appears genuine, supported by the emotional testimonies of the parents and medical context provided. However, the focus on emotional appeal may limit a comprehensive understanding of the broader implications surrounding rare diseases. Therefore, while the article is credible, readers should seek additional sources to gain a more complete picture of the healthcare landscape related to RDEB.