'One in a million': Disorder requires girl to shield herself from sun

It was a Friday afternoon, a few hours before the Sikeston Jaycee Bootheel Rodeo, and Graycen Beardslee had a lot of decisions to make: what saddle she wanted her horse, Red, to wear, whether to braid his mane, and which pair of boots best matched her shirt.

But most important, Graycen had to decide which of her hoods was least likely to fall off while riding around the arena. Choosing the wrong hood would be catastrophic, and having her mother chase after her to retrieve it is an embarrassment no 13-year-old wants to endure.

Graycen has XP, a genetic disorder less commonly known as Xeroderma Pigmentosum, that disables her body from repairing skin damaged by ultraviolet rays -- which makes going out in the sun a pretty arduous task.

To protect her body from the rays, Graycen must cover herself from head to toe, including a hood that resembles a beekeeper mask. The heavy fabric covers her head completely, except for a clear sheet of plastic that covers her face.

While stroking Red in her backyard stable, Graycen looks exactly like every other teenager -- especially as she ignores her mom to text on her white iPhone.

Graycen Beardslee, 13, chats with classmates during their art class, Thursday at Kelly Middle School. (Laura Simon)

But it hasn't always been that way.

"In 2004, we found out Graycen had XP and that it was one in a million," explained her mother, Kimberly Lambert-Beardslee.

Graycen was 2 at the time, and it's been a constant battle ever since to keep her healthy.

"Graycen got sick Dec. 27, 2014, and we took her to the emergency room in Cape (Girardeau), and then very shortly after ended up in St. Louis for a week, because she had lost like four pints of blood and she had no platelets," Kimberly said.

She recalled with perfect clarity each move she and her daughter made during that time -- the months of steroids, the small improvements, and finally being tested for Evans Syndrome, a rare autoimmune disorder in which the immune system destroys the body's red blood cells, white blood cells and platelets.

Graycen Beardslee, 13, holds her duck, Ming-Ming. (Laura Simon)

"We have two one-in-a-million rare things," Kimberly said. "When we went out to the NIH, which is the National Institutes of Health -- we go out there about every five years and they do a really extensive work-up on Gray -- and they kind of got involved in the Evans Syndrome, too. While we were there, one of the doctors asked Gray if she knew that XP was one in a million. She said 'Yeah,' and he said, 'Did you know Evans Syndrome was one in a million as well?' And *... he said there's nobody else that has both in the United States."

Since then, Kimberly has had to make a lot of tough decisions, too, such as choosing between two types of medication to treat her daughter. One can cause aggressive melanoma, which Graycen has had before, and the other presents a risk for developing leukemia.

"As the mom, I had to make a lot of tough choices, and with options like that, I was like, 'Which one do you choose?'" Kimberly said.

She remained upbeat while discussing these difficult choices, and said she manages it with a mix of her faith and needing to be strong for her daughter.

"I can't let her see me get down or be negative about it, but when we do go to the hospital -- and we've been up there twice this year and had to stay for a while in Children's (St. Louis Children's Hospital) -- and when we're on the oncology floor and we see these other moms pushing their children around and knowing *... they've probably been up there for months" -- Kimberly pauses and takes a deep breath -- "My life's not so bad. And Graycen's life is not so bad. Are are there things that I'm going to have to deal with and she's going to have to deal with for the rest of her life? Yes, but you know, I have her, and basically she's pretty healthy -- she just has a lot of stuff to deal with."

Despite the obstacles, Graycen spends a good deal of time outdoors. She's got the makings of a future farm right in her mom's backyard. With about two dozen chickens, a duck, two horses and a collie named Dakota, Graycen loves working with the animals.

"My mom wants me to be an ultrasound technician," she said, talking about her future career plans. "But I was thinking about being an ultrasound technician for horses."

For her birthday, which happened to be the same Friday as the rodeo, all Graycen wanted was to ride in the grand entry and walk in the parade -- and that's exactly what she did. As Graycen wore her long sleeves, gloves and hood that day, Kimberly said she couldn't have been more proud of her daughter.

"I commend her because everybody's going to be looking. Everybody's going to be saying, 'Look at that little girl with that thing on her head,'" Kimberley said. "She's gonna get so many stares from everybody, but she doesn't care."