Gabrielius Misurenkovas, a 12-year-old boy from east London, has been bravely battling a rare and incurable condition since he was a baby. At the age of just 6 months, he was diagnosed with a genetic disorder called recessive dystrophic epidermolysis bullosa (RDEB), which affects the skin and causes it to blister and tear at the slightest touch.
Despite the challenges he faces on a daily basis, Gabrielius refuses to let his condition define him. He is a determined and resilient young boy who has captured the hearts of those around him with his positive attitude and unwavering strength.
RDEB is a serious disease that is caused by mutations in the COL7A1 gene, responsible for making a protein that helps to bind the layers of skin together. This results in fragile skin that can easily break and form painful blisters. In Gabrielius’ case, the blisters cover his entire body, including his internal organs, making it difficult for him to eat, breathe and even move.
Living with RDEB means that Gabrielius’ skin requires constant care and attention. His family has to spend hours every day carefully dressing and bandaging his wounds to prevent infection and promote healing. Despite the discomfort and pain, Gabrielius remains optimistic and rarely complains about his condition. He has learned to embrace his unique appearance and is an inspiration to those around him.
Due to the severity of his condition, Gabrielius has to stay at home for long periods of time, unable to attend school or socialize with other children. But this has not stopped him from pursuing his dreams and passions. He is a talented pianist and loves to play and compose music. He has even released his own album, with all proceeds going towards research for RDEB.
Gabrielius’ story has struck a chord with many people, and he has received an outpouring of love and support from all over the world. His family has set up a fundraising page to raise awareness about RDEB and to cover the costly medical expenses associated with his condition. They have also started a petition to urge the government to invest more in research for rare diseases like RDEB.
Through his journey, Gabrielius has become an advocate for people with RDEB, using his voice to raise awareness and inspire others. He has been featured in numerous news articles and TV interviews, where he shares his story and educates others about the challenges of living with RDEB. He has also become a role model for other children with the condition, showing them that they are not alone and that they can achieve their dreams despite their challenges.
Despite the difficulties he faces, Gabrielius remains positive and has even said that his condition has made him a better person. He has learned to appreciate the little things in life and has a deep empathy for others. His family and friends describe him as a kind, compassionate and wise soul, far beyond his years.
Gabrielius’ courage and resilience have touched the hearts of many, and his story serves as a reminder to all of us to never give up, no matter how tough the journey may be. He is a shining example of strength, determination, and positivity, and his story will continue to inspire and motivate others for years to come. We stand with Gabrielius in his fight against RDEB and send him all our love and support.
