Richard John Lee was born on Thanksgiving morning, November 24, 1983 in San Diego, California, the fifth of Bob and Penny Lee’s six children. Richard was born with a rare (three documented cases in the world) chromosome deletion, which was later diagnosed as interstitial deletion of the long arm of #11 chromosome. He scored 1 out of 10 on the Apgar Test for newborns. Eighteen specialists evaluated Richard and came up with a diagnosis that listed him as a “Failure to Thrive Baby” because of his inability to move fingers, arms, or legs, and to independently suck in nourishment. They predicted that he would die within three months. They also said that he had brain damage, would be both deaf and blind, and live in a vegetative state. Since he would have no quality of life, they recommended that he be placed in an institution, forgotten about, and allowed to die. Older brother Robert said: “Mama, we can’t do that to Richard. If he’s only going to be with us for a little while, he has to know that he’s a part of our family, and that we love him.” We brought him home on Christmas Eve, with the knowledge that he would only have about two more months to live. Thus began the roller coaster ride of life for the Lee Family. That three months stretched to thirty-five years! Richard passed away late in the evening on Saturday, January 12, 2019, after struggling with a severe bout of bilateral pneumonia in December. He was found by staff member of the Topham’s Care Center in Orem where he had been living after he had been discharged from the hospital with a feeding tube. Prior to that, he had been living at the Provo Care Center.
Richard had a special spirit about him that touched the lives of the people in his circle of influence. This included his immediate and extended family members, Church family, friends, and multiple medical professionals. Time and time again, Richard managed to beat the odds against death, so his death at this time was a shock to all of us.
Richard rode a school bus to many programs designed especially to help those who were physically and mentally challenged. With countless hours of physically therapy, he was able to take his first step at age 4. He made up for lost time by constantly running from here to there whenever he had the chance. He endured over 100 surgeries and countless hospital stays. Through it all, he was nearly always happy. His love for Disney movies knew no bounds. While living in San Diego, he would wait for his dad to come home from work to go to Disneyland. He loved riding the roller coasters. Even going down hills while riding in the car, he would hold his arms up high in the air and have a big smile on his face.
We learned Richard could read during a visit with Grandma Ellis in Kelseyville, California. While we were playing Scrabble, Richard reached in and started grabbing tiles. To our surprise, he had spelled words that were important to him: Cheerios, Pinocchio, Alice (for Alice in Wonderland), Peter Pan, and even spelled his name. Later, Aladdin, and Return of Jafar became favorites as well as Lion King and Mulan. This opened up a whole new world for him. Richard got his own computer when his dad’s office relocated. He immediately typed entire phrases, such as: “I want popcorn.” “I want to go to bed.” “Mama loves King Richard.” This was amazing until Richard discovered that he could pull the keys off the keyboard.
King Richard communicated using American Sign Language—Richard’s style. Instead of just shaking his hand up and down for “yes”, he was emphatic with one strong downward motion. While attending a meeting for special ed teachers, his teacher found herself responding with this same strong downward motion to a question that had been asked of her. It brought a few raised eyebrows from her co-workers, but it made all of us realize, he spoke in his own ways. He always got us to understand what he needed. Recently, his “yeses” simply became the “thumbs up” gesture. If he didn’t like what you were asking him to do, he simply would cover his ears and turn away from you.
Richard also loved FedEx. While riding a bike at school one day (with an empty FedEx box in the bike basket), the loop of his shoelace caught on the bike pedal. Richard lost his balance, fell, and broke both bones in his right arm - requiring surgery. One of the aides told her brother, a FedEx employee, about the accident. He, in turn, told his boss, who mentioned it to the President of FedEx. The President then checked to make sure Richard was back in school and sent a truck load of FedEx items and a beautiful letter thanking Richard for being such a wonderful advertiser for their company. One of the items sent was a “stress ball” that Richard used for therapy to regain strength in his arm. It had the FedEx logo on it. He never stopped liking empty FedEx boxes and trucks, but he never got on a bike again.
Richard had his first grand mal seizure when he was 17. This brought about another group of medical professionals. Fortunately, medications helped to keep the seizures under control.
After earning his Certificate of Completion from Timpview High School when he aged out of the program, Richard was placed in Hidden Hallow Care Center as his mom required vertebrae fusions in her neck. Richard developed pancreatitis and had a lengthy hospital stay. When he was discharged with multiple medications he was moved to the Provo Care Center. He was there over 10 years. He worked with the Daybreak program, shredding paper for pet stores to use in cages and other simple tasks.
April, 2018 was the beginning of a tough medical year for Richard. He endured hernia surgery, bleeding ulcers, kidney issues, extreme weight loss (lowest weight of 86 pounds), an upper respiratory infection and pneumonia. After his 2-week ICU visit in December, he moved to Topham’s Care Center in Orem as he now had a feeding tube. On his final day of life he seemed happy and spent the day walking around and exploring areas of his new residence. The exact cause of death is unknown.
Richard is survived by his parents, J. Robert “Bob” Lee and Penny Kathleen Ellis Lee; Siblings: Amy Lee Gabbitas (“Rick” Richard Wayne Gabbitas) of Springville, Utah, Robert Ellis Lee (“Eddie” Edita Alumbaugh Lee) of Bellevue, Washington, Laura Lee Lund (Matthew Decker Lund) of San Diego, California, Randolph Thomas Lee (Tiffany Gross Lee) of Newberry, Florida, Ryan Andrew Lee (Victoria Jasmine Vernon Lee) of Ft. Bragg, North Carolina, and many nieces and nephews. He is preceded in death by his maternal and paternal grandparents respectively: Randolph Franklin Ellis (Mildred Wray Thiese Ellis) and Thomas Wilford Lee (Carolyn Thompson Lee), and many aunts and uncles.
Richard was, and is loved by his family and the many people in his circle of “friends”, including medical professionals who grew to love him over the years. The family wishes to express our gratitude and appreciation to all those who cared and served Richard. He will be missed.
Funeral services with be Saturday, January 19, 2019 at the Nelson Family Mortuary at 11:00 a.m. Viewing will be at 10:00. The address of the mortuary is 4780 N. University Avenue, Provo, Utah 84604. Phone (801) 405-7444.