Girl, 10, with a 'one in a million' disease hopes for a miracle - Cleveland 19 News Cleveland, OH

Girl, 10, with a 'one in a million' disease hopes for a miracle at Cleveland Clinic

CLEVELAND, OH (WOIO) -

Grace Pour's family was looking for a miracle when they brought their 10-year-old daughter to the Cleveland Clinic two years ago. 

At the time, Grace's skin was hard from her head to her knees and her internal organs were also beginning to harden. 

The disease is called scleroderma. There's no cure and doctors don't know why some people develop the rare autoimmune disease.

"It's really hard when you have an 8-year-old lying in bed at night asking you why her life is so terrible and why is this happening to me?" said Pamela Pour.

They're heartbreaking questions, Pamela couldn't answer for her little girl, Grace. Two years ago, while living in China, Pamela began noticing a difference in the way her daughter looked and felt. 

"If you or I were to touch our cheeks right now, it would move. Her's didn't move. Not at all. It was simply like touching a doll's face," Pamela said. 

"It was scary. I just didn't know what was going on and why," Grace said. 

Doctors in China also didn't know what was happening to Grace, so Pamela decided to do her own research. She discovered a disease called systemic scleroderma

"I spelled it wrong. I didn't know how to pronounce it. I didn't know what it meant, but it was one of the few possibilities that hardening of the skin was listed as a symptom," she said. 

Scleroderma is an autoimmune disease. It hardens and thickens the skin, tissues and, sometimes, the organs. Patients typically aren't in pain, but the disease makes it tough for people with advanced cases to do some of the simplest things.

"Brushing my teeth, even moving my arm was hard," Grace said. "It was hard just to do everything, even what I loved was hard."

Only 300,000 Americans have scleroderma. In kids, like Grace, it's one in a million. 

"It definitely would've been something that would've killed her," Pamela said. 

Pamela knew her daughter needed help. The family left China and came to the Cleveland Clinic where they met with Dr. Robert Rennebohm. 

At that point, Grace's skin had hardened from her head to her knees. Rennebohm also found the disease in Grace's lungs and esophagus. He suggested an aggressive treatment that used four drugs they'd never combined before.

"We thought we'd be extremely lucky if any of these things reversed," Rennebohm said. 

Reversing the disease is exactly what happened to Grace. 

"We would absolutely call it a miracle," Pamela said. 

"Before I barely wanted to do anything, barely even wanted to play with my friends, but now I feel great. I feel like running around," Grace said. 

Grace's skin and organs began to soften. These days, Pamela said her daughter only has small spots on her shoulders. 

"Probably the most miraculous thing about her recovery, we'll call it, is her lungs have completed reversed, which is unheard of," Pamela said. 

It's a success, Grace's family can only describe as a miracle. "It just makes me have hope," Grace said. 

If Grace's disease wasn't treated, she would've died. 

The family lives in metro Detroit, which is where Grace is seeing doctors and continuing medication. They hope Grace's treatment at the Cleveland Clinic helps doctors develop a cure.

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