Hand-poured soy candles with a mission.
In July 2018, Danielle and Frank McCann were blessed with the birth of their daughter, Rian Mary Ann.
When she was four months old, Rian started experiencing uncontrollable seizures. By late Spring, she was diagnosed with a very rare epileptic genetic condition - CDKL5 deficiency disorder. The Albany Medical team referred the McCanns to Boston Children’s Hospital’s Center of Excellence for treatment.
By early Fall 2019, Danielle left her job as an art teacher to take care of Rian full time. Today, four-year-old Rian returns to Boston monthly, and is on multiple medications to limit her seizures and pain. She is nonverbal and cannot walk, but can sit up on her own using an adaptive highchair and (when she’s having a great day) she crawls! Nourished through a feeding tube, Rian is visually impaired, has cognitive and global developmental delay, as well as cardiac concerns.
“Unfortunately, with her disorder, we have to take it day by day. Things can turn within a number of hours,” said Danielle. “I don’t know what the next day is going to bring. It’s really rough.”
A Ray of Hope
As unexpected as Rian’s condition has made life for the McCanns, what’s most surprising is their extraordinary resilience.
“I never imagined myself in this situation,” said Danielle, “but I know who was created, was the person we were meant to be with. It was as if, suddenly, nothing else mattered more than the child in front of us.”
“For someone who can’t talk, Rian sure can let us know what she wants,” continued Danielle. “Her smile and laugh are infectious. She shows so much love through her expressions, it makes you melt and light up inside. It’s the best feeling in the world.”
Shedding a Little Light on the Issue
In January 2021, the McCanns started the Little Norwegian Candle Co. with the goal of sharing Rian’s story.
“It’s all about Rian; advocating for her and raising awareness about her condition,” said Danielle. Through their candle sales at local shops; the Willow Marsh Farm Store and the Amazing Finds Boutique in Ballston Spa, and Mocha Lisa’s Caffe in Clifton Park, as well as appearances at regional craft fairs, Danielle hopes to shed light on this unique corner of the special needs world.
“Once you educate people, you never know what it might lead to,” she said. Because it is so rare, a lot more research is needed to understand, treat, and hopefully, one day, find a cure for the disorder. This is why a portion of their proceeds is donated to the International Foundation for CDKL5 Research.
Small Wonders
At the core of these candles is a profound appreciation for the connection that resides at the heart of their creation.
Everyone in the family pitches in to help. While Danielle’s mother, Michelle, watches Rian, Danielle is joined by her father at their fair booth (he also makes deliveries throughout the Capital Region and into the North Country). Frank, a disabled veteran who serves full-time in the military, handles packaging and shipping.
Based on Frank’s nickname for Rian – his “Little Norwegian”- the company has introduced the McCanns to others of Norwegian descent.
“Before we had this company, the only Norwegian people we knew were our extended family,” said Danielle. “Since then, Norwegians have been coming out of the woodwork. We’ve been able to meet them and learn about the culture. It’s been really nice. We never had that before.”
Sharing Special Memories
Of the more than 64 scents of hand-poured soy candles that the Little Norwegian Candle Co. sells, Danielle’s favorite is the one that reminds her of home. At Christmastime, her mother made mounds of delicate Nordic Krumkake cookies. The aroma of cardamon and vanilla danced through the air as the family packed around the table, laughing, and enjoying the delicious treats.
“It was awesome and I wish I could pass that onto my daughter. Those were really special moments. When I smell the Krumkake Holiday Candle, it brings so many memories back,” said Danielle.
This Spring, 10 new scents have been added to their line, joining beauties like White Sage and Lavender, and the top-selling Lemon Pound Cake. Made without additives, these super clean-burning, vegan, and cruelty-free candles are sold in reusable mason jars with plant-able wildflower seed tags and shipped in biodegradable packaging.
Buy them online at thelittlenorwegiancandleco.com. Follow The Little Norwegian Candle Co. on Facebook and Instagram and check out Rally 4 Rian-CDKL5 on Facebook for updates on Rian’s journey.
