Lifestyle Health Former American Idol Contestant's 3-Year-Old Daughter Has a Rare Disease that Causes Benign Tumors Althea Grace dealt with her baby's diagnosis of tuberous sclerosis complex while competing on American Idol, managing her daughter's medical needs without giving up on her dreams By Susan Young Published on January 20, 2022 02:54 PM Share Tweet Pin Email Photo: Courtesy Althea Grace Even before she became a contestant on American Idol, Althea Grace kept her dreams in sight. The Chicago-area native had been performing since she was 10 years old and graduated from high school early at age 16 to pursue her singing and songwriting career. When she unexpectedly became a single mom at 19 to her daughter Lennon, she took the baby on tour with her and continued to work on her own music. But at 10 months old, Lennon started having seizures and was eventually diagnosed with tuberous sclerosis complex, a rare disorder that causes benign tumors and affects 1 in 6,000 newborns in the United States. Lennon's condition triggered liver failure, which left her hovering near death until she was able to have a transplant at Children's Hospital Los Angeles just before her first birthday in January 2020. "When the doctors gave me Lennon's diagnosis, I was terrified," says Althea Grace, 22, who dropped her surname. "I had been taking Lennon on the road with me, but how could I continue that with all her medical needs?" Courtesy Althea Grace She began to navigate a complex medical system and pivoted her career plans to accommodate doctor appointments and emergency room visits, relying heavily on a support group for families affected by tuberous sclerosis complex known as the TSC Alliance. Through it all, she refused to leave music behind entirely. In the midst of COVID-19 restrictions and a 90-day hospital stay with Lennon, she tried out for American Idol Season 19. Before she performed at the Hollywood auditions, Althea Grace brought attention to Lennon's disorder during an emotional encounter with the judges. John Fleenor/ABC Visibly shaken, she told her story to Katy Perry, Lionel Richie and Luke Bryan. Adding to her stress that day was a call from her dad — he and her mom relocated to Los Angeles to help care for Lennon — telling her Lennon had to be taken to the emergency room after ripping out a feeding tube. "I had never missed an appointment," Althea Grace says. "I had never missed an emergency, so getting on that stage took everything in me." She remembers Perry's motivating words: "Katy Perry had told me that I needed to use what I was going through to put a fire under me," she recalls. "It was a powerful moment for me to see how music got me through what was happening." American Idol Contestant Makayla Brownlee Relives the Scary Moment She Had a Seizure Onstage Her appearance on the show struck a chord with viewers as well. When the episode aired in March 2021, Althea Grace was overwhelmed by responses of people dealing with tuberous sclerosis. One mom posted a photo of her and her daughter in the hospital watching the episode, saying, "It made us feel comforted and not alone." It had quite an impact. "I read that and just bawled my eyes out," says Althea Grace. "Because I had moments of questioning if I should just give up (my career) and stay home with my daughter." She says of all the things that came out of her brief "American Idol" experience — including a boost to her music career — the best was being given a platform to highlight the work of the TSC Alliance. "The Alliance just create this beautiful network where everyone helps everyone else," Althea Grace says. "They got me an appointment for Lennon with the head of the tuberous sclerosis department that I never knew even existed." Courtesy Althea Grace And the group continued to provide support when Lennon went into liver failure in Los Angeles. She was only given a few days to live unless a donor could be found. Because so much of her liver was destroyed, she needed a deceased donor. When a donor liver became available, Althea Grace says she experienced pure joy before she started sobbing. "It just hit me. My baby gets to live because another mom just lost hers," Althea Grace says. "Being in the ICU is like the happiest moments of people's lives, surrounded by the worst moments of people's lives." Preemie Baby with Rare Heart Defect Has Life Saved by Surgery That Pushed 'the Limits of What's Possible' For her, the worst time was when she confronted the doctors prior to Lennon's transplant and asked for total honesty about the then-fragile child's chances of recovery from surgery. "They told me to say goodbye to her because they didn't even know if she would make it out of surgery," she says. "When she got back from surgery, she was still comatose and had a breathing tube that they might not ever be able to remove." It was a long recovery for Lennon, but Althea Grace is grateful for the progress Lennon has made. "She's an absolute animal. She's just the most wild, spunky, smart child I've ever met in my life.," she says. "It's miraculous that she was as sick as she was." From left: Children's Hospital Los Angeles Transplant Hepatologist George Yanni, Lennon, Althea Grace, CHLA Pediatric Neurologist Vijay Vishwanath. Children's Hospital Los Angeles Lennon's neurologist Dr. Vijay Vishwanath of Children's Hospital Los Angeles credits both mom and daughter for her recovery. "Every time I've met Althea she has a lot of questions and comes well-prepared. She's shown a lot of courage through each step," Vishwanath says. "Lennon's got a lot of energy and she keeps the encounters pretty lively. She's rambunctious and full of life." At her recent appointment at Children's Hospital Los Angeles, Dr. George Yanni, Lennon's transplant hepatologist, gave her kudos for providing essential support. In addition to Lennon's tuberous sclerosis diagnosis, Yanni explained that Lennon requires complex post liver transplant care, including giving medication on time, providing a special diet, avoiding certain foods and reporting any unusual behavior or symptoms. Coming up on Lennon's third birthday, Althea Grace looks back and feels incredibly fortunate for her daughter's survival, as well as for staying true to herself. "I got to tour a little bit recently and at this point I know anything is possible," she says. "I'm just in a state of reevaluating. Lennon getting sick was the biggest shift in priorities I've ever had. I took a lot of things for granted and now I realize what matters to me now is getting to spend as much time with her as I can."