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Simon and George CullenBrothers with a rare genetic disease
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Content:
- Simon and George Cullen: Real-Life Vampires from the 'Twilight' Saga
- Living with a Rare Condition
- A Challenging Journey
- A Different Lifestyle
- A Life Full of Love and Support
Simon and George Cullen: Real-Life Vampires from the 'Twilight' Saga
Simon and George Cullen are two British brothers, aged 13 and 11, who suffer from a rare genetic disorder called Hypohidrotic Ectodermal Dysplasia (HED). This condition makes them sensitive to sunlight, gives them sharp fangs, and extremely pale skin. However, they have not yet learned to fly or drink human blood. In reality, Simon and George are just regular boys from Sudbury, Suffolk, who have to avoid direct sunlight to prevent overheating due to their limited ability to sweat.

Living with a Rare Condition
Living with HED is not easy for Simon and George. People often stare at them because of their extremely pale appearance. Some even mistake them for having leukemia. However, their friends think they are cool and even try to nickname Simon "Edward" after the vampire character from the 'Twilight' series. HED affects only 7,000 people worldwide, making it an incredibly rare condition.

A Challenging Journey
Simon was diagnosed with HED shortly after birth when his body temperature dropped unexpectedly and blisters appeared on his hands and around his eyes when exposed to infrared light. The doctors at West Sussex Hospital confirmed the diagnosis when Simon didn't develop any teeth by the age of six months. When Mandy, their mother, became pregnant again 18 months later, they were warned that their second child might also have HED. Despite the challenges, Mandy and her husband, John, have learned to cope with Simon's unique needs and were not overly worried when their second son, George, was born with the same genetic condition.

A Different Lifestyle
Today, the boys, often called "vampires," cannot participate in outdoor sports due to the risk of overheating. They spend their days playing video games indoors and have to avoid intense sunlight because of their sensitive and pale skin. Simon and George constantly use high SPF sunscreen, wear hats, and sunglasses for protection. Simon, who didn't have any teeth until the age of five, struggles to chew many foods. The only meat he can eat comfortably is sausages. However, George, two years younger than Simon, already has more teeth. Their parents hope that a dental implant surgery using a bone graft from Simon's leg will help him gain a more functional bite. Although the operation will be painful, Simon is ready to endure it for the chance to have the teeth he desires.
A Life Full of Love and Support
While there is no cure for HED, with proper care, love, and support from their parents, Mandy and John, Simon and George never feel disadvantaged or limited by their condition. They are surrounded by a loving family and have a positive outlook on life.