KS: SIBLINGS SPEND 1ST SUMMER OUTSIDE WITHOUT PAIN
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WICHITA, Kansas (KAKE) — For the first time in their lives, two Wichita siblings have spent the summer outdoors without excruciating pain.
Clint and Hattie Stuhlsatz have a rare genetic condition that causes severe pain when they are exposed to sunlight.
“This summer was the first summer that I actually wore shorts,” Hattie said.
For the first time, they are not counting down the minutes until they have to go indoors. The siblings could only spend at most 15 to 20 minutes in the sun before experiencing extreme pain.
“It’s way more painful than itchiness,” Clint said. “It’s more like stings and like your skin’s burning.”
Hattie described the feeling as being like a bunch of bug bites all over her body.
“One of our first symptoms that we figured out from Clint, his eyes swelled shut when he was a little kid, and we had no idea why,” their mother, Allison Stuhlsatz, said.
Both siblings were born with Erythropoietic Protoporphyria, also known as EPP.
The condition affects about one in 75,000 people globally.
“We’ve gone about explaining it to people, saying they’re allergic to the sun, which is not technically true, but they are having a toxic reaction in their blood,” Allison said.
For years, Clint and Hattie learned to live around the condition.
They wore protective clothing, including hats, long sleeves and masks, and spent much of their daytime indoors.
“I have been looked at weird, like when I’m walking around at like a store, a mall, or just outside on a walk,” Hattie said.
They also had to give up many activities, like sports, summer birthday parties and school recess.
“The hardest part was just not being able to grow up like I guess a normal kid would, and not be able to do activities that I love, like play football or play soccer,” Clint said.
Clint eventually had to give up football. After games, he said he would sometimes have to stay inside for three to five days because of the pain.
Now, both siblings are part of a clinical trial for EPP. The name of the treatment is a medication called Biopertin.
the medication is a small oral pill of glycine transporter 1. (GlyT1)
“Just thinking about a year and a half ago, I couldn’t have been outside without being in immense pain, so it’s just really amazing what this pill has done for me,” Clint said.
Now, they can spend hours in the sun — something they once thought would be impossible.
“This summer’s been surreal. It really has been. It’s been so cool to see them,” Allison said. “I mean, they’re living their best lives this summer for sure.”
This summer, the family traveled to Florida to visit relatives and went to the beach for the first time.
“We’re out there in the water, and they weren’t covered up,” Allison said. “Just to see him, just like any other kid, out in his trunks swimming, same thing with Hattie.”
For the siblings, those moments are about more than just vacation. They’re experiences they never thought they would get to have.
“It feels like I’m free and I’m normal,” Hattie said. “It just feels like my dream come true.”
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