Knowing the challenges of 2-year-old Adeline May’s condition, one might expect her to live in a darkened house with blackout curtains covering every window. In reality, however, Adeline’s home is full of light – a sanctuary of sunny rays that are free of ultraviolet radiation.
Beyond the safety of her home, there are few places Adeline can visit during the daytime without risking severe burns. She and her mother, Angie May, spend their daylight hours hiding from the sun. The two recently moved to Murphys while husband and father, Dwayne May, travels for work and builds a new home for the family in the low-UV state of Washington. In the meantime, Angie May wants the community to know about the realities of her daughter’s life, so that she may be included in those regular childhood activities so many take for granted.
Xeroderma pigmentosum (XP) is a rare genetic disorder affecting approximately 300 people in the United States, and Adeline is one-in-a-million. She was diagnosed with the condition at the age of 19 months, but her mother knew long before that validation that there was something seriously wrong. At six weeks old, her daughter suffered blistering sunburns after being left in the shade, in January, for 40 minutes. Though doctors dismissed her concerns as a new mother, she continued to insist that the constant burns through clothing, nightly oatmeal baths and red eyes were not normal.
Only after May and her husband had unofficially diagnosed their daughter through their own research and connected with an XP support group were their fears confirmed. Adeline tested positive for XP, Type D, a variation of the condition that not only brings the standard increased risk of skin cancer, but also presents a 60% likelihood of developing neurological issues during one’s lifetime.
Since the DNA of individuals with XP cannot repair itself after being exposed to carcinogens – especially UV light – Adeline would need to shield herself from the sun in order to remain healthy. As there is no known treatment for XP other than exposure prevention, this would mean a lifetime of tinted windows, lengthy home confinement and covering from head to toe when going outside during the daytime, regardless of the weather.
For a parent, having a child with XP is a tremendous weight to bear. Adeline’s parents are working hard to provide their child with a life that is as normal as possible, utilizing creative solutions in building their new home such as UV sensors and an airplane hangar for outdoor play.
“We want to give her a safe life but not a sheltered one,” Angie May said. “She doesn’t have to live in a box.”
While in Calaveras County, May is reaching out to other parents and children’s spaces to try to provide a social life for her daughter.
“She knows it’s not safe outside. It’s difficult to walk past other kids playing. It’s hard to watch pools and playgrounds,” May said. “I try to keep her distracted.”
For Adeline and May, libraries have been a saving grace, as one of the few places Adeline can go during the daytime to meet other children.
“Things for children here are really limited,” May said. “All group play dates we’ve tried to go to are all outside, and private businesses are tricky because (with) some of them, you really have to change their whole business of doing things.”
Libraries, however, usually have limited windows and the opportunity to socialize at storytime, May said. But it still isn’t that easy. Currently, May has to carry her daughter into the library wearing all of her (very hot) gear, while also carrying a large bag of tinted plastic window coverings on her back. She has to take Adeline to a “safe” portion of the library and adhere the coverings to the windows before her daughter can move about freely.
Fortunately, change is coming soon to libraries in San Andreas, Murphys, Arnold and Angels Camp, as Calaveras County Librarian Nancy Giddens is implementing solutions to make those spaces safe for Adeline.
“We have a 100-percent inclusivity policy,” Giddens told the Enterprise on Aug. 7. “We would go out of our way to always be ADA compliant with everything, and in a situation like this, we’ll work to make this a place where Adeline can go because she doesn’t have a lot of places she can go.”
According to Giddens, the San Andreas Central Library will likely have UV-blocking window tint within the next two weeks, installed with the help of volunteers.
As far as the other libraries are concerned, Giddens said, “I will find the money to do it somewhere. Either from Friends of the Library or the county.”
For May, who said she has felt welcomed in Calaveras County thus far, the efforts of others to make her and Adeline’s lives a little easier makes all the difference – even the simple act of closing a blind or drawing a curtain when they walk into a store.
“It’s a huge load off of my shoulders, because I’m alone most of the time with her,” May said.
Additionally, May hopes that educating the public about Madeline’s condition will lighten the nuisance of constant questions and comments from curious onlookers. The pair face so many inquiries, in fact, that May has resorted to carrying cards with a description of XP.
“People come up and make comments. They don’t often ask. They call her ‘beekeeper’ or ‘astronaut’ or ‘vampire.’ We don’t like that,” May said. “I can tell, when we walk through large crowds, there are some more sets of eyes on her. If I’m holding her, I can feel her kind of cave into me a little bit because people are looking at her.”
According to May, the best way to approach Adeline and others who may look different is to respectfully ask questions.
“Just ask, ‘This looks special, what is it?’,” May said. “It opens it up without assumptions, and I can just inform. And if I’m too busy, I can give you a card.”
For more information on xeroderma pigmentosum, visit https://xpfamilysupport.org/.