Our Journey with Neurofibromatosis type 2
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 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 NF2-Related Schwannomatosis
NF2-related schwannomatosis, formerly known as Neurofibromatosis Type 2 (NF2), is a rare genetic condition that causes non-cancerous (benign) tumors to form on nerves throughout the body—most often along the brain, spinal cord, and peripheral nerves. It affects about 1 in 25,000 people worldwide.
These tumors, called schwannomas, grow from the protective sheath surrounding nerves. The most common form, vestibular schwannomas, develop on the hearing and balance nerves, often on both sides. Over time, they can lead to hearing loss, tinnitus (ringing in the ears), and balance difficulties. Tumors can also appear on spinal or cranial nerves, sometimes causing muscle weakness, numbness, vision issues, or other neurological challenges depending on their location.
The growth pattern of these tumors can be unpredictable—some remain stable for years, while others grow more quickly. Treatment options vary and often include surgery, radiation, or targeted drug therapies aimed at slowing tumor growth or reducing symptoms. While there is no current cure, ongoing research supported by organizations like the Children’s Tumor Foundation (CTF) continues to make progress in identifying promising new treatments.
For many families, NF2-SWN represents not just a medical condition but a lifelong journey of care, resilience, and adaptation. Our hope is that through greater awareness and continued research, future treatments will offer safer, more effective options and improved quality of life for those affected.
Until then, we will continue to use our platform to share our story, raise awareness, and bring comfort through what we create. Each candle we pour carries a little light of hope—for our family, and for every family touched by NF2.
We invite you to consider our family your candle company, and to share a piece of our home and heart 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!
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