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Meet Henry

Henry, IPEX Syndrome Patient

Henry’s mom Kate has lived all over the globe, from New York to London, California, Italy, and back again. But when it came time to start a family, she convinced her husband to settle down in Pittsburgh. She even made a spreadsheet outlining pros and cons. Now, she counts her lucky stars that they did — in part because Pittsburgh has a world-class pediatric hospital that’s helping to save her son’s life.

“I feel like something brought us here to raise our family,” Kate says. “We’re beyond grateful to have these great doctors here, close to home.”

Her two-and-a-half-month-old son, Henry, has a rare genetic disease called IPEX syndrome. As a result, he has diabetes, and his immune system is attacking his organs. As soon as he’s strong enough, he’ll need a bone marrow transplant and other specialized treatment.

Kate says she’d travel anywhere to get Henry the care he needs. But having access to groundbreaking care and treatment locally — close to her family and her other children — is priceless.

Little Henry would surely agree. He adores being near his brother and sister, and nothing soothes him like the sound of his sister Mila singing his favorite song: “Twinkle, Twinkle, Little Star.”

“We’ve just been blown away by the brilliance of the doctors,” Kate says. “I just think it’s a special breed of person that can work in a children’s hospital, and they have some really great people here.”

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