QUARTZ HILL – Imagine having to avoid the sun at all times… for the rest of your life.
For two-year-old Oliver Kei, this is reality.
The Quartz Hill toddler cannot be exposed to any sort of sunlight – not even for a second – because his body cannot protect itself from the sun’s ultraviolet rays.
“Sun means skin cancer for him,” said Oliver’s mother, Noelle Kei.
Oliver has Xeroderma Pigmentosum (XP), an extremely rare genetic condition that affects about one in one million births and is characterized by an extreme sensitivity to ultraviolet (UV) rays from sunlight. Undiagnosed and untreated, XP can lead to blindness and death from skin cancer at a very early age.
Lucky for Oliver, doctors caught his condition early. Kei said her son was diagnosed in September of this year, when she sought medical advice for his blue nevus mole.
They went from dermatologist, to pediatrician, to pediatric dermatologist before finding answers, Kei said.
“She (the doctor) examined him and then she went out of the room, and then she came back into the room with another doctor and three giant medical textbooks,” Kei said. “They both concurred that it was XP.”
Kei was forced to make immediate, drastic changes to her son’s life upon leaving the doctor’s office.
“She told me to go home and put sunblock on him every two hours, with a long sleeved shirt, long pants, a hat, and sun glasses – in the house!” Kei said. “It was extreme.”
A Google search for Xeroderma Pigmentosum was horrifying, Kei said.
“The first thing you find is ‘your kid’s going to die by the age of 10 or 12, or live maybe into the age of 20, if you’re lucky…,’ and so I just collapsed,” Kei said. “To know that the child you’ve nurtured is not going to have a full life is just so devastating, I can’t even describe it.”
Kei soon channeled her devastation into action, and sought out other families affected by XP. Her search led her to the Sacramento-based XP Family Support Group, and its founder, Michele Milota, who has a 10-year-old daughter with XP.
“She basically opened the doors for us,” Kei said. “She gave us hope that, if we took all the correct precautions, our child could have a much more fulfilled life… it isn’t all just gloom and doom like what we saw on the Internet.”
With the help of the XP Family Support Group, the Keis made the major life changes needed to protect little Oliver.
They covered their home windows with tin foil, as a temporary fix, to block out all sunlight.
“Right now it’s like living in a cave,” Kei said. “We have no concept of what time it is.”
They also made arrangements for a permanent custom tint for the home windows, specially manufactured to block all incoming UV light, Kei said. When installed, the custom tint will allow Oliver to safely see outside during the daylight hours.
In order to leave the house during the daytime, Oliver must be slathered in custom sunblock, wearing a long sleeved shirt, a tightly woven jacket, jeans or tightly woven pants, socks, shoes and gloves. He must also wear a bucket hat, fitted with a double-layer of fabric on the back and a special clear plastic sheet on the front.
“The times we go out when Oliver is in his hood, we get strange looks,” Kei said. “People might think he’s contagious, but he’s not contagious in any way, this is a genetic disease.”
Oliver’s four elder siblings have rallied around their baby brother, Kei said.
“We go out as a family every night to support Oliver,” she said. “I want him to be able to still have that time outside enjoying the beautiful elements that God has given us.”
Kei said members of her church have rallied around her son, as well.
Local members of the Church of Jesus Christ of Latter-day Saints have created Team Oliver, a group that joins the Kei family for nighttime play dates, now known as After Dark Glow in the Park Parties.
“Everybody shows up at the park as soon as the sun starts to sink in the sky and brings whatever they have that glows in the dark,” said Team Oliver creator Laura Mathews. “We’re out in the dark having a great time, and I bake cookies and Noelle brings hot chocolate to keep the kids warm.”
Support Team Oliver on Saturday, Dec. 1
Team Oliver will host its first fundraiser this coming Saturday (Dec. 1), with 100 percent of the proceeds going to support Oliver’s care.
The Team Oliver Yard Sale starts at 7 a.m. Saturday, Dec. 1, at the Willows Apartments, located at 1608 West Avenue K-8 in Lancaster.
The yard sale will feature entertainment from the famous skateboarding bulldog Bony Hawk. The event will also feature a bake sale, with donations from Nadia Cakes and other community bakers, Mathews said.
Several thoughtful residents have donated items, like refrigerators and stoves, Christmas decorations and lots of clothes and toys to be sold at the yard sale, as well, Mathews said.
Mathews will be accepting additional donations for the yard sale between 11 a.m. and 1:30 p.m. Monday, Nov. 26, at the Willows Apartments.
The funds raised from the yard sale will be used to buy Oliver a pricey custom suit, made with NASA-tested materials, which will make it much more convenient for Oliver to go outside during the daytime.
Team Oliver also hopes to purchase a vest with cooling packs, which will keep Oliver from overheating in his new “space suit,” and to purchase more of the expensive custom sunblock that Oliver must wear at all times.
Mathews is hoping the entire community will support Oliver and his family by coming out and purchasing items from the yard sale.
“Let’s show them that we’re all in this together, and they’re not dealing with this alone,” Mathews said. “Let’s show some love and compassion.”
Kei said her low-key family is overwhelmed and humbled by the outpouring of support.
“We are thankful for our friends and for how the community has rallied around Oliver,” she said. “We can’t even express our gratitude enough.”
Kei hopes Team Oliver can raise some much-needed awareness about Oliver’s rare condition.
“If pediatricians and dermatologists know about the early signs of XP, it gives your child a much better chance in life,” Kei said. “If you don’t know, then you have many more years of exposure to harmful UV rays. And when you have that extra exposure, you are setting yourself up for having countless cancer surgeries.”
For more information about Xeroderma Pigmentosum, visit the XP Family Support Group’s website at http://www.xpfsg.com/.
For more information about Team Oliver and how you can help, visit at www.facebook/goteamoliver.