NORTHVILLE, Mich. - It's called scleroderma. It's an autoimmune disease that is rare in adults, but even more rare in children.
When Grace first began developing symptoms more than two years ago, her mother, Pamela, knew something was wrong, but she didn't know what.
At the time, Grace and her family were living overseas in China for her father's job.
"I just kept telling my husband, 'Something's not right with Grace.' I would change her earrings and her ears would seem kind of tough and getting thicker. It was getting harder and harder for her to brush her teeth. Her lips wouldn't move apart so the toothbrush could get between her lips and her teeth," said Pamela Pour.
Grace's eyes and her forehead also seemed different.
"I knew my mom was worried," said Grace Pour. "I can tell when she's worried. She has this look on her face."
They saw doctors in China, but no one had any answers.
Pamela Pour began doing research online.
"In my heart, I was panicked. I was very panicked," said Pour.
Pamela still has the journal where she jotted down possible explanations.
"Look, I misspelled 'scleroderma,'" she pointed out.
Pamela and Grace flew back to the United States in March of 2015.
"We went to several different hospitals, and in the end, yes, the diagnosis was scleroderma," said Pour.
The word scleroderma comes from the Greek words for "hard" and "skin." The disease causes the skin and connective tissues in the body to harden. The type of scleroderma Grace has is systemic.
"When it's systemic, there's organs involved in the hardening of the tissue," said Pour. "So Grace's is her lungs, as well as a small part of her esophagus."
Grace began aggressive treatment at the Cleveland Clinc.
"She did a very aggressive treatment of Cytoxan, which is a chemotherapy. She did IVIG which is immunoglobulin, and she did IV and oral steroids," said Pamela Pour.
"We were doing all these treatments, and I didn't know what to think of it. I was scared," said Grace Pour.
But it worked.
"We started seeing a difference by the time we got to almost Christmas," said Pamela Pour. "Now I think she's at least 80 to 85 percent better."
Grace is now under the care of doctors at the University of Michigan and Henry Ford Hospital.
"She's a fantastic kid," said Dr. Dustin Fleck, a pediatric rheumatologist at the University of Michigan's C.S. Mott Children's Hospital. "To come out with overall fairly good mobility and have her where her lung disease has actually seemed to reverse is very great and is something we don't see very often."
Fleck says getting the proper care as quickly as possible is key.
"Overall, how kids do depends on how soon they were diagnosed and how aggressively they were treated. On average, systemic scleroderma in genaral takes about two years from the time symptoms start to actually become diagnosed."
Grace is very knowledgeable about scleroderma, but it's not easy being a child with a chronic disease.
"A child has different emotions and feelings and things and fears inside of them that we can't even imagine, and they can't necessarily tell us," said Pamela Pour.
Especially when you're one-in-a-million.
"It's like trying to say to someone, 'I have this,' and they don't believe you," explained Grace.
"It's something she'll deal with her whole life," said Pamela Pour. "She'll always have it. There's no cure, there's no getting it to go away. But we can hope that it doesn't flare up to that extent ever again."
Doctors still don't know what causes scleroderma. Grace and her family are working to help raise awareness about the disease and the need for more research.
"I had hope, and I want other kids to have that," explained Grace.
"Getting a lot more kinds of research into this to know which treatments are the most effective would be very beneficial," said Fleck.
"There's a lot of children and adults out there with rare diseases, and just because it's rare doesn't mean it's any less important," said Pamela Pour. "I want people to understand that it's just as serious as any other major disease."
To help support the fight against scleroderma, you can participate in or donate to the "2017 Stampede Scleroderma."
The annual run & walk will be held on Sunday, June 4th at the Detroit Zoo. Funds raised will go towards scleroderma education, research, and support.
To learn more about scleroderma and the Scleroderma Foundation Michigan Chapter, click here.
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