Jillian Arnold
Jillian Arnold is partner to her husband, Donald, and a mother to her two incredible children, Roman and Stella, who both suffer from an ultra rare and life limiting genetic disorder, ASMD (Acid Sphingomyelinase Deficiency or otherwise known as Niemann Pick Disease Type A/B). There is no known cure, but there are some promising treatments in the works.
Jillian wanted to start this podcast with the intention of sharing their journey with the world, share her truest, rawest, thoughts and feelings as she navigates life raising not just one, but two children living with a life-limiting genetic disease, and be able to connect with other parents who are also on an atypical path with their children. She knows how receiving a diagnosis like this can be completely and utterly devastating, but wants parents like her to realize that when you pull yourself out of the darkness and shock, there is so much light and beauty to be seen and experienced.