When Lexie was just 4 days old, she was diagnosed with severe congenital Long QT Syndrome. If you have never heard of this syndrome, it means she has heart arrhythmias and faces the possibility of sudden death. Her mother, Tracie, spoke to me on the phone on May 13. Her mother is a smart, strong, loving woman who lives with the scary possibilities of Lexie’s illness. I asked her what her first reaction was to Lexie’s infant diagnosis. She said she was very scared. As a single parent having her first child, she didn’t know what to do and where to go. Lexie’s condition changed everything.
Today, Lexie is 7 years old. She has a bright spirit. She loves games, movies, cartoons, and school! Around others, Lexie is positive. She will point to her defibrillator and say, “Look! I have a motor!” Sometimes around her mother, Lexie will show a more vulnerable side. Tracie turns to her family and her best friend for positive reinforcement. They reassure her of her constant years of managing Lexie’s health. Tracie gets strength from their messages of empathy and encouragement: “You are a good mom! You are keeping her alive!”
Tracie also turns to support groups. Organizations online and otherwise helped to point her to resources and information that would help educate her about Long QT Syndrome. “It’s hard,” says Tracie. “Sometimes you want to give up and crawl under a rock. You are at the end of your rope. You think, ‘Is anything going to get better?'” She says you can’t imagine being thrown into a situation like this. She says it is full of stress and constant fear. She knows she does everything for the love of her child. She wouldn’t do anything else.
Reliance Children’s Foundation found Tracie and Lexie through a wonderful social worker at the hospital where Lexie receives treatment. Reliance Children’s Foundation paid the rent when it was in arrears and eviction loomed. “When you are paying out of pocket for all kinds of stuff, what do you do if you don’t have the money?” asks Tracie. She says there are not a lot of foundations out there that do what Reliance Children’s Foundation has done for them.
Not too long ago, Lexie needed an emergency surgery in another state. Time was short. Her social worker contacted Reliance Children’s Foundation, who quickly got into motion. Within a day, Lexie and her mother were on a plane to receive a very specific, rare operation. Tracie said, “Reliance Children’s Foundation has helped save me. It was like a weight lifted off my shoulders. Knowing this Foundation was like a personal savior or like an angel in disguise. I cried and cried. I can’t thank your foundation enough.”