Former 'American Idol' Contender Speaks About Daughter's Battle With Rare Genetic Disorder

Althea Grace, the 22-year old musician, became emotional as she shared the story of her daughter Lennon's battle with a rare genetic disorder. In an interview, the former "American Idol" contestant shared that her daughter had been diagnosed with tuberous sclerosis complex or TSC at ten months old.

What is TSC?

Tuberous sclerosis complex is a disorder that may cause or result in benign tumors in various parts of the body. Different organs such as the brain, eyes, heart, lungs, kidney, and skin may have tumors due to TSC. A rare genetic disorder affects 1 in 6,000 newborns in America, which means that around two babies born each day may have TSC. 

Symptoms include seizures such as those first experienced by Lennon. Developmental delay, autism, and intellectual disability are some of the aspects of the disorder. At present, there are an estimated 50,000 people in the United States living with the condition and about 1 million people worldwide.

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Heart-wrenching

Lennon first began to experience seizures before she was diagnosed with TSC. Althea remembers feeling so terrified when she heard of Lennon's diagnosis, especially since Lennon almost died after the disorder resulted in her liver failure. The infant's doctors said she only had a few days to live unless she received a liver transplant. 

"They told me to say goodbye," recalled the 22-year old single mom. Even when they found a possible donor, the doctors were unsure if Lennon would survive the surgery. The extent of Lennon's liver damage required a deceased donor. Fortunately and unfortunately, in January 2020, Lennon received a transplant just a little ahead of her first birthday.

After learning that there was an available donor, Althea was filled with joy and devastation. Joy at discovering that her daughter may have a chance to survive, but she was devastated at the thought that another mother had lost a child.

A Fire Under Her

On the day of her auditions for the nineteenth season of "American Idol," Althea received a devastating call from her father saying that Lennon ripped out her feeding tube and thus had to be hospitalized. According to the singer-songwriter, it took everything for her to get on stage due to her daughter's condition. She mentioned Lennon's condition to the judges of the long-running ABC show before her performance.

The contender said she was inspired by what Katy Perry told her in the interview. Perry told her to use her experience and the difficulties she is going through to put a fire under her. According to her, it was a decisive moment to witness how her music got her through everything. All judges voted "yes" for the Chicago native who performed a song she wrote during Lennon's hospital stays.

TSC Support

Althea received outpouring support from individuals and families impacted by TSC, making her feel less alone and more comforted. She was also assisted by a non-profit organization called TSC Alliance, which supports people affected by the disease.

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