A toddler with a devastating rare condition has a chance for health, thanks to an experimental drug and the tenacity of a CHOC Children’s physician. Galya Chan, 2, is showing marked improvement after nearly nine months of regular infusions of cyclodextrin, a compound that has helped mice with Niemann Pick C disease, the condition also affecting Galya.
After traveling to numerous specialists where they live in Northern California to solve their 11-year-old son, Ryan’s, excruciating stomach pain and frequent nausea, David and Randi Wilson felt hopeless. They were ready to move out of state to find the answer.
Ryan suffered every time he ate, sometimes writhing in pain on the floor. The young boy who enjoys cooking became increasingly malnourished as he rapidly lost weight. Meanwhile, medical experts attributed his mystery condition to everything from gas and anorexia to even being in his head.
Melissa Armedilla, 36, was born at Miller Children’s & Women’s Hospital Long Beach. So were her 4-year-old daughter and 2-year-old son. When she discovered that she was pregnant with identical twins, Melissa knew in her heart that Miller Children’s was where she wanted to introduce her babies to the world.