Our story starts on the date of July 27, 2018 when our daughter Rian was born. She is the LIGHT of our lives and the reason behind ‘the little norwegian’ candle company.
When Rian turned 3 months old she developed seizures. From there, we were thrown into a world of chaos and heartbreak. After multiple hospital stays and testing, our daughter was diagnosed in the spring of 2019 with a rare epileptic genetic disorder called CDKL5 Deficiency Disorder and was referred up to Boston Children’s Hospital where she now gets full time care.
In October of 2019, I had to leave my career as an Art Teacher to stay at home full time with our daughter. The world of having a ‘medically complex’ child consists of full time care. Rian does not walk, is nonverbal, is developmentally delayed, cognitively impaired and fed through a gastric - tube. She has heart issues, is legally blind and she is on daily oxygen. With insurance issues, therapy sessions, specialists visits - both my husband and I became our daughter's advocate in her day to day life.
There is not much known about CDKL5 and as a family who sees the daily struggles that our daughter goes through - we wanted to spread awareness about her disorder.
My husband and I have always loved lighting a candle and the feeling that it omits when you watch the flame dance and flicker. We especially love the scent that you smell and the memories that are evoked through that specific scent. We wanted to create something that we could give to people that would represent our daughter. Something that is pure and warm, that evokes a feeling of calmness. Our little girl melts the hearts of everyone she touches and what better way than to represent her than with a candle. Her smiles and laughs light up all that are around her.
If you are wondering about that ‘NORWEGIAN’ part? Oh yeah… that’s me. We love our heritage and we love our ‘little norwegian’ girl. That name was given by my husband who calls Rian his 'little norwegian girl'.
Please note that we donate a portion of our sales to the International Foundation for CDKL5 Research in honor of Rian and all families living with CDKL5 Deficiency Disorder in hopes of finding a cure. You can learn more about CDKL5 at www.cdkl5.com