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Meet Sofeia

Mia

If you’ve never heard of blue rubber bleb nevus syndrome, it’s probably because brave Sofeia is one of just 151 people in the entire world to be diagnosed with it.

“She normally doesn’t feel bad,” her mom, Kiley, explains.  “She has blue spots on her skin, and she also has spots on her small intestine that are internally bleeding.”

Sofeia had a blue spot on her head when she was born. Her doctors thought it was just a birthmark. Five years later, she finally has a diagnosis for the rare condition. She comes to
UPMC Children’s for weekly transfusions, and recently, had surgery to remove the spots on her small intestine. Without treatment, the internal bleeding could be life-threatening.

While she recovers, the staff at UPMC Children’s does everything they can to help Sofeia keep her spirits up. Sometimes that means petting a therapy dog or — Sofeia’s favorite — painting pottery.

“They’re just focused on her and what makes her feel better and happy,” Kiley says.

 

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