at the invitation and request of my first guest tonight, dr. paul hermatz who told izble's story to rachel last night. he needed patients to conduct clinical trials for a rare disease and he could not find enough patients for this rare disease to study in the united states. there's the full formal name of the disease on the screen right now. the professional shorthand for it is mps-6. it causes spinal cord compression and other growth abnormalities. and the doctor convinced izabell's parents to bring her to the united states to help medical research, to help other children who would be born with her condition. she's been participating in medical students throughout her life in the united states. her doctor credits her with helping him and his research team in making dramatic breakthroughs that have helped people with her disease live longer. patients with her disease used to live just a bit beyond the age of 20.