NEED TO KNOW

When Amanda LaValle's daughter Iris Hope was diagnosed with a rare form of mitochondrial disease, the mom of three admits she was "absolutely terrified"

She went on to learn that Iris is only the sixth person in the world to receive this diagnosis

LaValle tells PEOPLE how her push for genetic testing for her daughter potentially saved her life

When Amanda LaValle's daughter was diagnosed with a disease so rare it doesn't even have a name, the mom of three was left in disbelief.

"Despite many ultrasounds, we were expecting a typical healthy baby and had no cause to believe anything that would be different from our other kids," LaValle tells PEOPLE.

LaValle, whose family of five is based in Pennsylvania, was used to having painful pregnancies. With her first two kids — dau

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