Alex suffers from an extremely rare condition called parchment leather. He is allergic to the sun, and any going outside is a lethal risk for him. They managed to create a mask for him, imitating the human face, which provides protection against harmful UV radiation. The film about the 25-year-old’s disease was made by the BBC.
- The 25-year-old suffers from a rare condition called Xeroderma pigmentosum, or parchment skin
- This disease is characterized by extreme sensitivity to ultraviolet radiation. It causes ulcerative wounds on parts of the body that are directly exposed to the sun
- British artist and producer Zoe Laughlin helped create a new prosthetic mask for him, resembling a human face
- The mask provides full protection against harmful UV radiation
When Alex was just a few months old, the family walk ended in a disaster. Under the sun’s rays, the boy’s skin began to crack. Specialists diagnosed him with a rare genetic disease that occurs once in a million – Xeroderma pigmentosum, the so-called parchment leather.
Alexa status means she is 10 times more susceptible to UV damage than the average person, and causes severe skin burns after just a few minutes of exposure to the sun. Moreover, he is much more likely to develop cancer at a very young age.
Doctors said that being outside could even kill him, and recommended that he change his lifestyle: sleep during the day and live life at night. Initially, the boy stayed at home to avoid exposure to sunlight.
“We had curtains for the first few years, and I sat crying with him,” Alex’s mother said.
Over time, his parents decided to build a makeshift outfit for him, resembling a beekeeping suit, only instead of a net, a plastic lens was attached to the hat. The boy used it until the age of 25.
Zoe Laughlin learned about Alex’s illness, and helped create a hyper-realistic mask of a “second skin” – modeled on Alex’s image, which allows him to have more freedom.
Prosthodontists used a special camera that takes thousands of photos per second to capture a complete likeness of Alex, then they were transferred to a computer and printed as a 3D model.
The model was placed in plaster to create a mold for the mask, which is made of silicone with a UV index of zero.
– During the measurements, the mask gave a zero reading of the UV rays that were directed at it, which means that the pigment contained in the mask works well enough to completely block them. That’s a great message! Laughlin was fascinated.
Two months later, when Alex put the mask on his face, his parents were amazed and happy. Sunglasses were enough to make the mask virtually unnoticeable by other people. Alex was finally able to go outside without fear for his life.
“I didn’t think it would be possible,” he said.
Based on: thesun.co.uk / dailymail.co.uk / rmf24.pl