Almost through the entirety of her 7-year-old son’s life, Noelle Kei has safeguarded him from something that many take for granted: the sun.
When Oliver was 18 months old and developing dark freckles over his face, he was diagnosed with xeroderma pigmentosum, a rare condition that causes ultraviolet light—emitted by the sun and many household bulbs—to irreparably damage his sensitive skin. The condition places him at heightened risk of developing life-threatening diseases.
“When he was diagnosed, I was a flight attendant at the time, and his doctor said, ‘You will never be able to travel. You won’t be able to go to Hawaii,’ ” Kei, who lives in Quartz Hill, California, tells PEOPLE. “You won’t be able to do this or that, and she told us all the precautions that we needed to take with him.”
Due to the DNA damaging effects of UV exposure, the rare disorder increases Oliver’s chances of developing skin cancer by 10,000 times, and also increases his chances of developing cancer of the eye by 2,000 times, according to the National Organization of Rare Disorders. In the U.S. and Europe, XP is only found in one in every one million people.
Standard therapy for XP includes wearing UV-safe protection gear, such as hats and face shields to limit the disease’s progression. Patients must also test their environment for sources of UV light—which include halogen and unshielded fluorescent light bulbs, or even second-hand cigarette smoke, which contains carcinogens that damage DNA in similar ways to sunlight, the National Organization of Rare Disorders reports.
Kei says shortly after Oliver’s diagnosis, the family placed aluminum foil and Mylar blankets on all of the windows of their home, until they were able to get UV-safe film professionally installed.
“We were told that inside our home, Oliver had to wear long sleeve pants, hats and have sunscreen put on every two hours,” Kei, 45, recalls. “We darkened our house. We kept a few windows open, but we lived in the dark for a little bit.”
In the years since his diagnosis with XP (type C), Oliver has been able to see the world while under the careful eye of his parents, such as being able to watch the stars appear in the sky during nighttime trips to the beach.
“We wait until sundown and we will be there all late afternoon, where it is more comfortable for him and not as hot,” Kei explains. “Then everyone leaves the beach and we have the beach to ourselves. We’ll have a picnic under the starts and let the kids play in the sand.”
Most mornings before Oliver goes to school, his four older siblings help him get ready for the day, helping him put on sunscreen, gloves, a double-layered protective full bodysuit that stretches from wrist to ankle and a UV-safe hat and visor. It’s a team effort, but Oliver has been able to enjoy many things that he otherwise wouldn’t be able to do.
“Oliver can still have a happy life. We just have to do a lot of extra planning and preparation,” Kei says. “He has done a lot of things like any normal kid could do.”
The daily routine also helps him learn what he’ll have to do to protect himself from cancer-causing UV light when he is an independent adult, since XP has no known cure.
“XP can be challenging at times and it may be a different life, but it’s a beautiful life,” Kei says. “You can either let [it] get you down or you can choose to remain hopeful and positive and keep going. And that’s what we do. We choose to remain positive and full of hope.”
But seeing Oliver’s infectious smile makes it all worthwhile.
“He’s got a very vibrant spirit about him, he just has this love for life,” she says. “I love him. I’m grateful. It’s a privilege to be his mom.”
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