Teenager with Rare ‘Butterfly Skin’ Disease Faces Final Days Due to Life-Threatening Condition
Eighteen-year-old Rhys Williams, who suffers from a life-threatening skin condition called epidermolysis bullosa (EB), is in his final days after developing sepsis. Living with skin so fragile that even a minor cut could be fatal, Rhys, from Bolton, has endured a life marked by constant, excruciating sores covering his body.
Diagnosed as a baby, Rhys was not expected to live beyond his childhood. Remarkably, he surpassed expectations and celebrated his 18th birthday this September. However, his health rapidly declined following the development of sepsis and pneumonia. He was hospitalized on November 4, and doctors have since ceased all treatment, transitioning him to end-of-life care in a hospice.
With only days or weeks left, Rhys, who is under heavy pain medication, may not survive until Christmas, as per his doctors’ prognosis. His mother, Tanya Moores, who is also his full-time carer, expressed her fears and emotional struggle, trying to remain strong for Rhys and his younger sister, reported Daily Mail.
EB, known as ‘butterfly skin’ disease due to the delicate nature of the skin, has affected Rhys from birth. Simple activities like cooking, riding a bike, or brushing his teeth posed significant risks. Rhys attended a regular school but required constant supervision to prevent injuries.
Rhys, who often faced cruel remarks and stares due to his appearance, planned his funeral at the age of 13, aware of his limited lifespan. His wishes for the funeral, which include wearing red to honor his love for Liverpool FC (excluding Manchester United shirts) and releasing butterflies during the service, have been arranged with a funeral director.
In November, Rhys’ condition worsened, initially thought to be COVID-19, but tests confirmed sepsis and pneumonia. His health deteriorated drastically on November 14, leading to his current hospice care.
The family is now focused on fulfilling Rhys’ final wishes and has set up a GoFundMe page to raise funds for his funeral expenses. Donations can be made to support the family in giving Rhys the farewell he envisioned.