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Thursday, July 24, 2014

Girl whose rare genetic condition makes sunlight dangerous now has a life beyond the shadows

Sunday, September 14, 2008

(Photo)
FRED LYNCH ~ flynch@semissourian.com Kim Beardslee picks up her daughter, Graycen, from school in Sikeston, Mo. Graycen must wear protective clothing outdoors to shield her from the sun because she has a rare skin condition, xeroderma pigmentosum.
BLODGETT, Mo. -- Kim and Eric Beardslee weathered their daughter Graycen's preschool years living in shadows. Windows to their home were tinted. Lathering on special sunscreen became a morning routine for her like brushing teeth. Pulling on a protective hood and gloves to go outside was like putting on shoes.

Daytime outdoor play could cause cancer, so Graycen rode her bike indoors. After sunset, Graycen would gleefully climb into the pool.

The family located a specialist and support group. They endured 10 surgeries to remove precancerous growths from Graycen's skin.

Over the first five years of Graycen's life, Kimberly Beardslee created a shielded, light-fighting world that became normal to her daughter. Beardslee felt life was finally settling into routine.

But in 2007, Beardslee knew school would present a new challenge.

She lost sleep running questions through her mind. What would Graycen do during recess? Field trips? How would the other children react? What if there was a fire drill and Graycen had to rush outside, unprotected? Would the teachers treat her equally?

At the age of 2, Graycen was diagnosed with XP, or xeroderma pigmentosum. The incurable genetic disorder renders the body unable to repair skin damage from ultraviolet rays. The sun becomes a cancer-inducing enemy.

(Photo)
FRED LYNCH ~ flynch@semissourian.com First-grader Graycen Beardslee of Blodgett, Mo., takes a break from homework. She has a rare skin condition, xeroderma pigmentosum.
Every precaution must be taken to avoid the rays. To prepare for even brief exposure, Graycen must coat herself in special sunscreen and wear a hood, long pants and sleeves treated with a reflective spray.

"I don't care," said Graycen on a recent hot August day as she snacked on brownie bites, watched "SpongeBob SquarePants" and painted her toenails a bright pink. "I don't really mind," she said with a shrug, while switching to coloring.

She didn't always have the same acceptance. There was a time when doubt crept in, shadowing the start of kindergarten.

Thinking about school

(Photo)
FRED LYNCH ~ flynch@semissourian.com Kim Beardslee and her daughter, Graycen, start on homework after getting home from school.
Not long after Graycen was diagnosed, Kim Beardslee visited administrators from the Kelly School District to discuss potential accommodations.

Beardslee graduated from Kelly, as did her husband, Eric. They were high school sweethearts.

To her surprise, district administrators were willing to make all the accommodations, including tinting a bus and classroom windows. "It wasn't 'Can we get by with this,'" Beardslee recalled years later. "I didn't know what I was going to face. I had heard horror stories about people having to fight" for accommodations.

But an Aug. 7 birthday, a week after the cutoff, prevented Graycen from starting public school in 2007. Wanting structure and a smaller environment, and believing her daughter was prepared for kindergarten, Kim Beardslee began looking at private schools.

"She needed the discipline of having to sit down, start her work and not think it was all play time. Plus, she had been going to day care since she was 6 months old and was ready to start school," Beardslee said.

Homeschooling wasn't appealing. Graycen was already isolated. Social and gregarious, Graycen liked being around other children.

Through the online network and meeting other families at an XP camp, Kim Beardslee knew people who didn't take their child anywhere. But it was the simple things, like going to the mall or grocery store, that kept Graycen balanced, she thought.

"I think they need interactions, they need to be normal. And yes, she needs to wear a hood and gloves, and people are going to look."

Responses from private schools were discouraging. Graycen's age wasn't an issue; her disability was.

One principal worried other students wouldn't get enough vitamin D with the window tinting. Another wouldn't have enough staff to watch Graycen while the other children were at recess.

Finally, the last private school in Sikeston, Mo., garnered Beardslee a yes. Together, Beardslee, teachers and administrators began preparing for Graycen's first day of school in 2007.

A one-in-a-million chance

No major problems were detected during Beardslee's pregnancy. But shortly after birth, Beardslee noticed that Graycen's eyes were bloodshot, and she became worried about Graycen's red and irritated skin. Freckles at 6 months old were another warning sign, Beardslee learned later.

Doctors misdiagnosed the disorder as eczema.

In 2004, day-care workers recommended Beardslee read a "Woman's Day" article about XP.

"The article was about a little girl named Paris, but I thought, 'This is my kid. It was Graycen,'" Beardslee said.

The next day they visited a pediatrician. Consulting his medical book, the doctor found that XP was not a condition listed. He referred the Beardslees to a dermatologist in St. Louis, who confirmed the diagnosis and Beardslee's fears.

Only about one in a million people have XP in the United States, which in Graycen's case was passed to her because both parents are carriers of the recessive gene. In some XP patients, neurological problems can develop, including mental retardation, deafness and blindness, but Graycen shows none of these complications.

Graycen came into the public's view shortly after her diagnosis, as family members and friends organized a fundraiser to buy a special protective suit for the little girl who stole hearts with her smile and bouncy blond curls.

The day arrives

The Christian Academy, housed in a former bank, already had tinted windows and a welcoming staff. Either Beardslee or her mother, who works outside Sikeston, would pick up Graycen, so bus tinting wasn't an issue.

One of the first things Beardslee and the staff worked on was a brochure for parents explaining XP. "We didn't want anyone thinking it was contagious or asking why she had to wear the hood," Beardslee said.

Then they tackled plans for recess or outdoor activities. Graycen is permitted to go to the library, chapel or music room while others are outside.

"We decided to take her because she was a child that wanted to learn. We had no problem with Graycen being inside," said administrator Jeannette Smith.

Surgery to remove spots on her arm and leg kept Graycen out of school the first week. Both mother and daughter were slightly apprehensive but excited for the first day.

Beardslee remembers Graycen questioning her about how the other children would react.

"At times it kicks her. I asked, 'Why do you think kids are going to make fun of you?' and she said 'Because of all my freckles,'" Beardslee said.

In retrospect, the anxiety was for nought. Graycen turned out to have few problems making friends. Other than missing recess, she completes her school day like anyone else.

"The children have absolutely no problem with her not being able to play [outside]. They treat her like everybody else," Smith said.

Instead, Graycen was so successful at making friends that behavior became an issue. She can be hyperactive, Beardslee said, and is a jokester, a mechanism Beardslee thinks Graycen has adopted to make friends. "She can't go and do all the things with them, so she uses humor a lot," Beardslee said.

'Your normal first-grader'

Now in first grade this year, Graycen has less time for play than in kindergarten, and she longs for socialization time.

Most of her classmates are the same ones she had last year, so as they stuffed folders and books into their backpacks at the end of the day Monday, they appeared to pay no attention to Graycen as she pulled on a black zip-up sweat shirt and donned her hood.

"Graycen is just your normal first-grader," Smith said.

At home in Blodgett, Graycen pulled out her homework and mumbled that she liked kindergarten better.

Kim Beardslee is always there for Graycen to provide perspective. "There are always times when she says, 'I wish I could do this,' but I remind her about all the special things she has done," she said.

Most of the time, Graycen is upbeat or laughing. Through an XP society, Graycen has attended a California camp for children with XP, Camp Sundown, and has visited London and New York. At various special events, she has met professional football players and country music stars, including Brad Paisley.

And because Graycen has begun using a topical cream that "eats away" cells identified as potentially developing into skin cancer, Graycen hasn't required surgery in a year.

"Of all the kids I've met, the majority deal with it so well. Some of these are tough little kids," Beardslee said.

lbavolek@semissourian.com

335-6611, extension 123

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We met Graycen and her mom at Camp Sundown, a unique to the world night camp program, free to families with children who can never be in daylight. Graycen is a delightful, normal young girl who, like all our XP campers, only wants to fit in with her peers. This beautiful story is an excellent example of how well a school system, with the right caring parents and caring staff, are able to serve a very special child in a UV-safe environment. Congratulations!

Caren Mahar, Executive Director XP Society, www.xps.org

-- Posted by Caren Mahar on Sun, Sep 14, 2008, at 3:35 PM

Her parents should be very proud. She is a beautiful young lady!

-- Posted by Jacksonmom on Sun, Sep 14, 2008, at 9:46 PM

A very nice story ... fantastic parents and a brave little girl. Kudos to the Christian Academy in Sikeston for welcoming them with open arms.

W

-- Posted by Wisconsin on Mon, Sep 15, 2008, at 11:50 AM

Graycen is a beautiful little girl! Congrats MOM and DAD for helping her make such a good place for herself in the world!

-- Posted by mom4 on Tue, Sep 16, 2008, at 12:10 PM


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