Friday, September 05, 2008

Rare disease afflicts Roanoke County teen

Ethan Davis suffers from several skin conditions that can cause him to blister and break out in bright sun and in temperatures above 70 degrees.

Ethan Davis (left), wearing a cooling vest, and Andrew St. Clair practice band at Northside Middle School. Ethan has an allergic reaction to heat.

Photos by Jeanna Duerscherl | The Roanoke Times

Ethan Davis (left), wearing a cooling vest, and Andrew St. Clair practice band at Northside Middle School. Ethan has an allergic reaction to heat.

Ethan Davis cools himself with a small battery-operated fan that he wears around his neck.

Ethan Davis cools himself with a small battery-operated fan that he wears around his neck.

Ethan Davis swims laps in the pool at the Salem YMCA. Swimming is one of Ethan's passions, but because of the chlorine he can stay in the water only a limited amount of time.

Ethan Davis swims laps in the pool at the Salem YMCA. Swimming is one of Ethan's passions, but because of the chlorine he can stay in the water only a limited amount of time.

Ethan cools himself with a frozen bandanna while his mother, Joyce Davis, talks with school administrators and teachers about helping her son cope with his illness.

Ethan cools himself with a frozen bandanna while his mother, Joyce Davis, talks with school administrators and teachers about helping her son cope with his illness.

Ethan Davis clutched a small battery-operated fan in front of his face. His cheeks had already turned pink and were beginning to mottle.

It was hovering around 70 degrees inside the Northside Middle School classroom in mid-August, where his eighth-grade teachers, counselors and administrators had gathered to discuss his rare allergic reaction to heat and sunlight -- and how they were going to try to make the best of it this school year.

"When I'm in hot temperatures, I feel like I'm baking in an oven that's been turned on high," the 13-year-old said. "In direct sunlight, it feels like my skin is searing off or I'm on fire."

Ethan suffers from several skin conditions, the most serious of which is called porphyria, which causes him to blister and break out in bright sun and in temperatures above 70 degrees.

The condition -- sometimes connected to the origin of vampire legends -- has depressed both Ethan and his mother, Joyce Davis, and it has at times put them at odds with school officials.

As Roanoke County Superintendent Lorraine Lange put it: "We're trying to learn more about what he has and what we can do for him with an equal balance for keeping the schools running, too."

Persistent advocate

In their chilly North Roanoke County apartment, the blinds are drawn and the furniture is sparse. Davis, who is 54 and divorced, said she even had to sell off most of the family's furniture in a yard sale this summer to pay for supplies to keep Ethan's core temperature down.

As of last week, she was $193.14 behind on her electric bill, she said, a result of having to keep her thermostat set to 60 degrees. Mother and son were counting down the days till the cooler weather arrives.

In the summer, Ethan cools off by swimming at the Salem YMCA and staying indoors. When they venture out, she cools the car down first, then he dashes to it with a towel over his arms and legs.

The disorder has driven Davis to talk her way into appointments with out-of-state specialists and to call every church in the Roanoke Valley in search of donations for the expensive cooling vests Ethan wears to school. (Thanks to two churches and two anonymous donors, he acquired two this summer.)

It gave her the wherewithal to persuade a manager at Blockbuster to give Ethan free rentals on movies and video games. "When it's warm, we are literally prisoners in this apartment," she said.

It has made her a regular in the halls of Northside, where she's known as an emotional and sometimes fiery advocate for her son.

In the back-to-school meeting with school staffers, she cried several times as she went over the health plan she'd compiled for Ethan, with his doctors' signatures, in an effort to make sure his outbreaks were correctly treated at school.

In an interview, she said she believed that school officials last year mistakenly viewed her as someone who had Munchausen by proxy, a syndrome where parents -- typically mothers -- deliberately make people think their children are sick to attract attention and stir up drama.

Assistant Principal Carina Hughes said that was never the case. "I wish we could change her perception of us because we're trying ... to do the best we can, but sometimes she feels like it's not enough," said Hughes, who personally changes out the cooling packs Ethan wears in his vest.

School officials also allowed Davis to choose Ethan's teachers and to excuse him from gym class this year, at his doctor's request. And Lange arranged for Ethan to receive a CD copy of his textbooks to help him on the days when he has to leave early because of the heat.

In the back-to-school meeting, staffers said they would honor the Davises' requests: Ethan is allowed to leave class if he gets overheated -- which he does on most days -- to go to the school nurse's office, where he's given Benadryl and allowed to cool himself in front of a fan. Davis has also arranged to have a fan stationed on him during band class, which often runs warm because of its large size.

At Hughes' request, Ethan must make eye contact with the teacher so he or she knows he's leaving.

"That's no problem at all," Ethan said at the meeting's end.

About this, everyone agrees: Ethan's a great kid who made straight A's last year despite 29 absences, 29 tardies and having to leave school early more days than his mother could count.

'Sick of home'

The pain of porphyria is said to cause an agony that goes beyond childbirth or shingles attacks. King George III of England was allegedly driven mad by the condition.

Dr. Kent Harris at Carilion Family Medicine North Roanoke had never seen a case like Ethan's before. Porphyria is a little-known blood disorder for which there are only 10 specialists nationwide.

"Joyce is a very protective mother; she'll fight to the end for her child," Harris said. He praised her persistence in seeking treatment from a Washington Hospital Center expert in the disease: Without an appointment or even a place to stay, she talked her way into a meeting with the doctor and she and her son spent the night at a nearby Ronald McDonald House.

"I know she gets scrutiny for some of her past behaviors," Harris said, referring to heated arguments with school personnel and her refusal to turn over his medical records to the school because of privacy concerns. "But poor Ethan, he's not faking this."

Part of the confusion at school last year stemmed from the lack of a medical confirmation for Ethan's burgeoning porphyria, which can mimic other disorders and is hard to diagnose. It wasn't until after the visit to the Washington doctor in March that Harris had confirmation of the disease.

Because the main triggers for attacks are heat and sunlight -- and it's hard to control temperatures in a school -- "I can see how certain accommodations for one student out of hundreds could be very difficult," Harris said. "It seems to me that home schooling would be a good option."

Ethan tried that last year for a time, but staying at home all the time wore on him, and the isolation made him depressed. "My grades are the only thing I can control," he said.

So far this school year, the new cooling vests seem to help a lot, although Ethan has already had to leave school a few times -- including for a particularly severe outbreak Tuesday. After taking Benadryl and sleeping a half-hour in the nurse's office, he woke up redder than he was before and left school shortly after noon.

At home, he took more medicine and slept until 7:30 p.m., his mother said. For the next three hours, he completed the work he'd missed that afternoon plus his homework.

"It's all I can do to prove to myself that I'm good at something," he told his mother. He hates to miss school and resents it when people suggest that he should -- well-intentioned though they may be.

"He doesn't want to go home because he's sick of home," his mother said.

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