Today, Landon Cotton is all Indiana Jones in his wide-brimmed safari hat as he plays on a canopied swing set outside his grandmother's Rossville home.
But in time, grandmother Charla Cannon is afraid the 3-year-old might have to deal with name-calling or bullying because he is not able to wear shorts and short-sleeved shirts and play outside in the summer like all the other children his age.
Landon has solar urticaria, a rare sort of allergy to sunlight that manifests itself in the form of hives after anything beyond short exposure.
"His skin turns blood red," Cannon said. "He is clawing and scratching and itching. He can scratch himself and make himself bleed."
What he feels, she said, is like "piercing needles burning your skin." If he begins to get too much sunlight, she said, he complains the sun "is burning my face up, burning my face off."
It takes several hours for Landon to feel normal again, Cannon said. Brief exposure, on the other hand, does not cause him severe health risks.
Dr. Michael Lee Smith of the Monroe Carell Jr. Children's Hospital at Vanderbilt, the pediatric dermatologist who collaborated on the diagnosis with Dr. Wesley Galen of Children's Hospital at Erlanger, said solar urticaria is difficult to diagnose and can include metabolic disorders and toxic conditions.
Early on, Cannon said, primary care doctors didn't take seriously the family's fears that something was wrong with Landon. But one day, when the 2-year-old was having his iron checked and had to wait in a sunny waiting room, he turned red from the ultraviolet waves coming through the window.
When the iron test was completed and he saw the doctor, the doctor realized something was up and made a referral.
"We've seen nine different doctors," Cannon said. "He's had every kind of genetic test."
Smith said the rapidity of reaction to the sun and the lack of persistence of lesions led him and Galen to think it might be solar urticaria. Then, he said, he did testing to demonstrate that he reacts within minutes to UVA long wavelength light.
Smith said the disorder is rare in adults and even rarer in children, who are harder to treat.
"Some treatments can only be used in older kids, teens and [adults]," he said. "Many outgrow this over time, but it can persist indefinitely. [There's] no way to predict."
Now, Landon takes an antihistamine, a steroid nasal spray and an asthma drug, gets sunscreen slathered on, wears UV-protectant clothing and can be outside only 30 minutes in the morning and 30 minutes in the evening.
"He can't be like a typical child who can wear short sleeves," Cannon said. "They wanted him to do gloves and a face shield, but his dexterity [wearing them] isn't the same."
With very pale skin, Landon can break out sitting in the car, she said, and may be more likely to get a skin cancer by the age of 10 with prolonged sun exposure.
"You have to learn to deal with it," Cannon said. "You have to make the best of a difficult situation."
Landon will start prekindergarten in the fall, his grandmother said, but doesn't know he's different from anyone else.
"I don't know if that's a concern," she said.
To involve Landon in activities other than playing outside, Cannon takes him to the Creative Discovery Museum in Chattanooga, has enrolled him in karate where he's become a brown belt, and drives him to a library story time in Chickamauga, Ga.
Fortunately, "with kids this age," she said, his condition "is more of a curiosity" rather than something to belittle.
Contact Clint Cooper at firstname.lastname@example.org or 423-757-6497. Subscribe to my posts online at Facebook.com/ClintCooperCTFP.