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This Little Girl Suffers From A Condition So Rare Doctors Don’t Have A Name For It

It’s the toughest thing about being a parent. No one likes being sick, but when your child is suffering, you feel doubly bad. Not only do you worry about what’s affecting them, but there’s the added guilt of believing there is something you could have done to prevent it, or even more troubling, that you’re not doing enough to help.

This Is Katie Renfroe


Now imagine not knowing what is troubling your baby, with even the doctors flummoxed by what he or she is dealing with. When Katie Renfroe was born, it was clear she had something wrong with her. Turns out, she was diagnosed with megalencephaly, a growth development disorder which is characterized by an overgrowth of the brain. But that wasn’t all…and it’s the rest that has the medical community stymied.

She Suffers From A Rare Condition


One of the most troubling aspects of Katie’s condition is her face. It is several times larger than normal, and even with surgery, nothing seems to stop the increases. In fact, when surgeons go in, all they find is fatty tissue. They’ve ruled out dwarfism, and if they can’t find a definitive answer soon, the syndrome may be named after the girl.

So Far, Doctors Have Been Unable To Diagnose It


There’s More To Katie’s Story On The Next Page