Guest speaker Terri Littleton and Cultural Awareness Center coordinator Dr. Adrienne King sharing a smile in memory of their late daughters after the SCD presentation in the Cultural Awareness Center. Amari Grace | Staff Writer | [email protected]
Sickle Cell Anemia; A mother’s fight for her daughter
by Anastasia Jones and Amari Grace
Terri Littleton, the owner of the dessert company, Terri Does Desserts, learned how to bake from her mother as a young girl. She has been baking ever since. Her business, which has been successful for over eight years, showcases the bond and influence that a mother-daughter relationship can have.
However, Littleton was stripped of that relationship when her daughter suddenly died from an untreated case of Sickle Cell Disease, which she discussed when she came to City College campus in September to share her story.
Dr. Adrienne King, one of the coordinators at the Cultural Awareness Center, invited Littleton to speak for the Sickle Cell Anemia Awareness Month event on campus. Littleton said she wanted to share the story of her late daughter Kristian Nicole Jones, nicknamed Niki, in hopes of informing and giving support to those who may be affected by the disease.
King shares a personal connection to SCD; her daughter, Lauren King, also died from the disease. King met Littleton at her dessert shop in 2014 where they bonded over the mutual tragedy of losing a child. They were able to exchange hugs and condolences and have kept in contact ever since.
SCD causes damage to the blood system and vital organs by changing how the body carries oxygen through the body, according to the National Heart, Lung and Blood Institute website. The disease is not infectious but is transmissible from parent to offspring. The red blood cells lose their flexible shape and bend into a sickle or crescent shape. When bent into this shape, it becomes hard for the blood to flow properly and can cause blood clots throughout the body.
Niki experienced 12 blood clots by the age of 27, according to Littleton, and became familiar with the symptoms that the blood clots triggered. They caused extreme pain and had the potential to damage her organs.
“It’s a hard disease because it can attack anywhere,” said Littleton. “Niki’s (pain) was random.”
Niki warned her doctor that something wasn’t right, Littleton said. Niki had her heart and lungs tested after recognizing the symptoms of another clot. They scanned for blood clots, but nothing came up on the scans. The doctor sent her home. After a couple of days, she noticed the symptoms had not gone away. She went back to her doctor and explained her symptoms, only to be turned away.
“Niki comes from a middle-class family, but they (were) not doing anything. We were treated like drug addicts,” said Littleton. “But let’s take this a little bit further.”
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Littleton said that she and her daughter bonded during the battle against Niki’s disease. It was a rough time, Littleton remarked, but she noticed a boost in Niki’s morale as they fought as a team to save her life.
“In 2011 Niki became the face for the Sickle Cell Anemia campaign,” said Littleton. “[She was] helping people get involved by donating blood and bone marrow.”
Niki became a spokesperson for the Blood Source organization because of her condition. She hoped to advocate for other people who were fighting the same battle. Littleton said Niki aimed to bring people joy through humor and dedication.
In October 2012, Niki was rushed to the emergency room in excruciating pain, her mother said. The doctors advised her to wait out the pain given that she had recently had blood work done. Niki passed away in the hospital later that night.
Littleton had the grand opening of her dessert business the day after Niki’s death. She has been busy ever since and has not begun to deal with the aftermath of her daughter’s death.
“I don’t think I have [coped] yet because I’ve spent so much time making sure everyone else is OK and running a business,” said Littleton. “I’ve just been on what feels like autopilot. Every now and again it seeps up. It’s scary; you don’t know if you’re going to be somewhere and have a complete breakdown.”
At Niki’s memorial service, her family requested that people donate stuffed panda bears to local children’s hospitals. Littleton recalled Niki’s love for pandas and came up with an idea to help others who suffered from diseases like Niki’s. The family started a foundation named “Niki’s Panda Nation” to donate stuffed pandas to children in local hospitals and infusion centers. Since Niki’s death in 2013, the foundation has donated 1,200 stuffed pandas to sick children in need.
“[Public speaking] helps me use my voice,” said Littleton, “Not only to help hear her story, but to keep her memory alive. The Panda Nation is about giving back to people with SCD. To bring happiness and to make them forget about their disease even for one second means the world to me.”
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