Mariah and Mark Gillaspie were anxiously awaiting the arrival of their first child, a little girl named Emma. As far as they were concerned, she was going to be a completely healthy baby.
But it wasn't long after Emma was born that Mariah and Mark noticed very troubling symptoms. One day, Emma stopped breathing, curled up into a ball, and turned blue.
Doctors said she was experiencing dangerous "infantile spasms."
Emma started treatment, but she quickly relapsed, and the treatment came with awful side effects.
Nearly two years later, Mariah and Mark decided to have another baby. They welcomed their second daughter, Abby, but they started to notice the same red flags that Emma had shown as a baby.
The condition brought on seizures and painful, restless nights. Emma and Abby have little to no control of their limbs and must be fed through tubes.
Doctors spent many hours trying to diagnose Emma and Abby, and they finally did. The sisters have a rare genetic disease of which there is no treatment and no cure.
Not only that, but Emma and Abby are the only known patients in the world with this disease.
If you would like to learn more about the Gillaspie family, please visit the website for their nonprofit The Lightning and Love Foundation, which raises money for rare genetic diseases.
