Main Story Candles - Our Journey with Neurofibromatosis type 2
Share
Main Story Candles
Welcome to Main Story Candles! We are a family-owned and operated candle company, inspired by our unique journey and the challenges we’ve faced along the way.
My name is Adrian, and I am the owner and founder of Main Story. Along with my close family, we strive to build a meaningful fragrance company that curates scents designed to bring comfort and joy to those who need it. In addition, we aim to raise awareness and educate others about the difficult medical condition known as NF2, or Neurofibromatosis Type 2.
Our story began as that of an ordinary family, but our journey has been marked by countless struggles. Diagnosed with NF2 at the age of 15, my sister Marissa has faced the bulk of the challenges firsthand.
Neurofibromatosis Type 2 is an aggressive genetic mutation that causes benign tumors to form and grow throughout the body’s nerves, including around critical areas like the brain, brainstem, and spine.
Throughout her life, Marissa has undergone nearly a dozen major brain surgeries since her teens. Each surgery has taken a toll on her body, leaving her with less of herself each time, as is the nature of such critical procedures. Now 33 years old, Marissa has demonstrated immeasurable passion and determination for over 15 years, refusing to let her condition hold her back. She spends her days uplifting others and spreading love and inspiration to everyone she can reach, despite her own struggles.
At a young age, Marissa lost her hearing due to a difficult surgery, and connecting online became one of the easiest ways for her to form meaningful relationships and strengthen her support system. However, in 2020, at the height of COVID-19 and isolation, a tumor began to affect her optic nerve, damaging her eyesight.
Faced with the difficult decision not to undergo another surgery solely for her sight, Marissa’s world grew smaller. Without her sight or hearing, she became confined to her room, and for a time, the only comfort she found was in candles. Even as sign language became difficult for communication, the soft, soothing light and fragrances of candles offered her a sense of peace, warmth, and connection.
However, with time and much advocacy, our mom was able to arrange for Marissa to receive assistance from a school for the blind. In just a few short weeks, Marissa taught herself Braille, developing the skill faster than most.
Every day that she got out of bed was a testament to her strength and her unwavering dedication to not let her condition define her. She proved to the world that your fight doesn’t define you, and positivity can be found wherever you seek it.
As of 2022, her condition reached a critical point, leaving her immobile and bedbound. Navigating the complexities of the healthcare system has been difficult for our family, both emotionally and financially.
In early 2024, I took a leap of faith and launched Main Story Candles, hoping to bring more light to the world by raising awareness for NF2 while creating candles that Marissa would love. Each fragrance is carefully chosen, inspired by memories we hold dear. With every candle, you’re not just supporting a product; you’re supporting our family’s journey and the strength of our loved ones.
Our company promise is simple: to curate comfort and memories, one candle at a time.
More About Neurofibromatosis Type 2 (NF2)
As mentioned, NF2 is a genetic mutation that causes aggressive tumor growth throughout the body, often surrounding critical systems such as the brain and spine.
Symptoms tend to manifest as tumors grow, causing sudden paralysis and other serious complications as the tumors compress nerves, the spine, and the brain. The growth of these tumors is unpredictable, and the most concerning are those located around fragile systems.
Currently, there are few medications available to treat the unique tumors associated with NF2. As a result, surgery remains the most viable option. With regular tumor growth—sometimes reaching half a centimeter per year—patients with NF2 can expect a lifetime of major brain surgeries.
Our hope is that, through continued research, better treatments will emerge, transforming the lives of families affected by NF2.
In the meantime, we will continue to use our platform to spread awareness of this condition while creating comforting products for those in need.
We invite you to consider our family your new candle company and to share a piece of our home with yours.
Thank You for Reading!
We truly appreciate you taking the time to learn about our story. Your support means the world to us, and by sharing our journey, you help spread awareness about NF2 and the strength of those who live with it every day.
Please consider sharing our story with friends and family so that we can continue to inspire others and raise awareness for this important cause. Your kindness can make a big difference, not only in the lives of our family but in the lives of many others who are facing similar challenges.
Thank you for being a part of the Main Story Candles family. We’re so glad you’re here!
Connect with us on Facebook | Instagram