Those who knew Sandra Kyung Lee describe her as outgoing and active, with a loving spirit. She was a professional musician, a mother, a wife, a daughter and an artist. But to her husband Charles, she was simply “Butterfly.”
Those who knew Sandra Kyung Lee describe her as outgoing and active, with a loving spirit. She was a professional musician, a mother, a wife, a daughter and an artist. But to her husband Charles, she was simply “Butterfly.”
In June, Sandra succumbed to Amyotrophic Lateral Sclerosis after a three-year battle, at the age of 42, leaving behind a husband and three small children. Charles called her “Nabi,” the Korean word for butterfly.
Friends and family of Sandra, of Cypress, will be celebrating her life and legacy while raising awareness for ALS, also called Lou Gehrig’s disease, with a memorial and fundraiser at A Place of Our Own salon in Los Alamitos.
“As a child, she was very curious and active,” said sister, Jane Kyung, 44, of Sunnyvale, California. “I remember her playing violin with our mom on piano.”
The ALS caused her to give up playing the violin and running, but the hardest thing for Sandra was not being able to interact with her children, C.J., age 2, Matthew, age 3, and Michael, age 5, Kyung said.
Sandra was born in Korea to a piano teacher mother and college professor father, graduating from Tustin High School while growing up there and in Irvine. She played the violin since age 3, earning her bachelor’s of music in violin performance, with a minor in art at Boston University and a master’s degree in music from Cal State University, Long Beach. Later she would perform as a professional violinist for orchestras, bands and in musicals. She was married to her husband for more than 7 years, and moved to Cypress about 2 ½ years ago. She took up oil painting while in college, and inspired her mother to become a professional, internationally recognized Korean artist.
“It was pretty hard for her to deal with the ALS because Sandra was always very active, loving to hike and be outdoors,” Kyung said. “But once Sandra knew what it was, I sensed a peace in her voice.”
Sandra’s husband Charles said that the disease first started with a limp foot. The mystery eventually pointed to ALS, an incurable, progressive degenerative neurological disorder resulting in muscles wasting away, leading to death usually in two to five years and usually striking adults over the age of 40. Voluntary muscle movement gradually deteriorates, although the mind is fully aware. Despite the disease, Sandra stayed strong.
“She was a fighter all the way,” Charles said.
Debbie Jackobs is the owner of A Place Of Our Own salon in Los Alamitos and met Sandra at Sea Coast Grace Church in Cypress. She formed an informal caretaking group from the church with Kathy Kou and Marilyn Edmonds that would eventually grow to 30 plus strong and still meets every Monday at the salon.
“When I met Sandra, she was already into the disease a year,” said Debbie Jackobs, who got to know Sandra while bringing her family meals. “She was already having a hard time talking. She would communicate by texting with her right thumb, but eventually couldn’t do this,” said Jackobs.
Jackobs said at the end it became difficult to watch what the disease had done to the once vibrant woman.
“We would meet every Monday at the salon to encourage each other and to pray. We still get together and still help out Sandra’s family,” Jackobs said.
Kou recalled that Sandra remained focused on those around her.
“Her loving and fun spirit, made everyone feel so special. And, despite all the struggles that she was dealing with, she always showed concern for us, and what was happening in our lives. Her faith and trust in God was such an amazing example to us all,” Kou said.
Jackobs fondly remembers Sandra for her wisdom, sense of humor, and for putting God first in her life. She said she liked journaling and reading her Bible, and that it gave her great insight. The accomplished violinist even competed in marathons. In her seventh marathon, Sandra represented the ALS Association, Orange County Chapter, and had a relay team pushing her in her wheelchair to the finish line.
“I think it was her quiet time journaling and spending time with God that got her through her illness,” said Jackobs. “She always put God first. Being a Christian was a big part of Sandra’s life.”
When Sandra traveled on a missionary trip to China about nine years ago, her group became lost and the story was that butterflies miraculously appeared leading them to their destination. To Sandra, the butterfly was a symbol of God’s provision and presence in her life, which led to her husband giving her the nickname “Nabi.” It is in her memory that A Place of Our Own is selling butterfly necklaces. The salon has already raised $3,000 since Sandra’s passing to help ALS awareness and her family.
A Place of Our Own salon in Los Alamitos is hosting an event on Sunday, Sept. 15 from 12 p.m. to 4 p.m., where prints of Lee’s oil paintings along with butterfly jewelry will be sold. There will be entertainment, refreshments, fun activities for children and an opportunity drawing. The Shops at Arbor Village will be donating a percentage of their sales and 100 percent of all proceeds go to the ALS Association, Orange County Chapter, and to benefit the Lee family.
Sandra Kyung Lee’s final message to be inscribed on her memorial gravesite will read, “Love God first, then all the other stuff will line up. Truly enjoy now. Don’t wait for things to get worse to appreciate life. Just always be thankful. Complaining is a waste of energy. Meditate and fill your mind with the nature of God.”