On December 25, 1977 Nita received an unexpected Christmas present: her son Lee was born prematurely. When he began to show signs of developmental delays, doctors blamed his premature birth, but Nita suspected his delays were caused by something more. In Lee’s early childhood, doctors confirmed her fears; they diagnosed Lee with Duchenne Muscular Dystrophy—the most severe and progressive form of muscular dystrophy.
Lee, who loved playing outside with his friends, began having balance problems by age 2 ½. At age 7, he needed braces on his legs, and at age 8 he needed his first wheelchair. At the time Lee was diagnosed, most children born with Duchenne Dystrophy didn’t live past their teens. Lee celebrated his 37th birthday last year.
Nita first contacted the Tennessee Justice Center when Lee was 20 years old. She was concerned that Lee’s private duty nursing hours would be cut when he turned 21. TJC helped Nita file an appeal that enabled Lee to keep his nursing services, and has continued to advocate for the services Lee’s doctors order ever since. When his health plan cuts services or denies needed care, Nita doesn’t take “no” for an answer. TJC is honored stand by her side for every battle for the last 17 years.
Nita says, “TJC has been here, getting me educated to our rights, giving me hope, and showing that they care. They are angels. They’ve helped us throughout the years – with appeals to get Lee’s care, to information I needed in order to keep Lee’s care, and just the care they’ve shown when we’ve had to struggle with changes in TennCare policies.”
Lee is ventilator dependent. He can talk, but he cannot eat, dress himself, or move without assistance. With his nursing services he was able to attend Middle Tennessee State University. He graduated with a degree in journalism. Lee loves to write about sports, especially racing. Although Lee is now only able to move the pointer finger and thumb of his right hand, he continues to blog about his passion for sports.
Throughout all the difficulties, Nita has ensured that Lee gets the care he needs. Lee said of his mother, “She works five to six days a week. The whole TennCare battle we went through was really stressful. Every free minute she had she spent talking to nurses and TennCare. No matter how busy she was or what she had going on she always made sure she was staying on top of it. A lot of people could have given up, but she stayed with it. She made sure that I got what I needed.”
Lee is Nita’s youngest child. His older brothers, Michael and Wayne, now live with him. The whole family gets together for dinner once a week, followed by a viewing of Lee’s favorite TV show, The Good Wife. Even though Lee can’t eat the food his brother cooks, he still sits at the table just so he can be with his family. Lee has a great sense of humor and loves playing games with the family, especially Trivia and 20 Questions.
Nita believes children with disabilities should be allowed to remain at home with their families when possible. She says, “Children deserve to be cared for in their own home. They deserve hands-on care when it’s needed and shouldn’t have to wait to be on someone’s time slot to get it.” For her tireless dedication to making sure the needs of her son are met, TJC is honored to call Nita a Mother of the Year.
Photography credit: Lenny Burnett