'I was terrified': Former American Idol contestant Althea Grace shares emotional story of daughter's battle with rare genetic disorder TSC

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Former American Idol contestant Althea Grace is speaking out on her daughter Lennon's battle with a rare genetic disorder.

In an interview with People magazine, the 22-year-old musician described her difficult experience after Lennon was diagnosed at 10 months old with tuberous sclerosis complex (TSC), which causes benign tumors to form in many parts of the body.

'When the doctors gave me Lennon's diagnosis, I was terrified,' Althea told the magazine.

Difficult: Former American Idol contestant Althea Grace is speaking out on her daughter Lennons's battle with a rare genetic disorder.

She continued, 'I had been taking Lennon on the road with me, but how could I continue that with all her medical needs?' 

TSC affects 1 in 6,000 newborns in the United States. An estimated 50,000 Americans are living with the disorder. 

Lennon was first diagnosed with TSC when she began to experience seizures. The infant was near death after her condition resulted in liver failure.

Heart-wrenching: In an interview with People magazine, the 22-year-old musician described her difficult experience after Lennon was diagnosed at 10 months old with tuberous sclerosis complex (TSC), which causes benign tumors to form in many parts of the body

What is TSC?


Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. 

Symptoms include seizures, developmental delay, intellectual disability and autism. 

At least two children born each day will have tuberous sclerosis complex. Current estimates place tuberous sclerosis complex-affected births at one in 6,000. 

Nearly 1 million people worldwide are estimated to have TSC, with approximately 50,000 in the United States. 

 The incidence and severity of the various aspects of TSC can vary widely between individuals—even between identical twins.

There is no cure for TSC but treatments and medications are available for many symptoms.

Most people with TSC can live a normal life-span. 

Information courtesy of  the TSC Alliance

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However, in January 2020, she was able to receive a transplant just ahead of her first birthday.   

The single mom auditioned during the long-running ABC show's nineteenth season, with her episode airing in March 2021. 

Ahead of her performance, Althea told the judges Katy Perry, Luke Bryan, and Lionel Richie about her daughter's health struggles.

On the day of her audition, the singer-songwriter had received a distressing call from her father, who told her that Lennon had been hospitalized after ripping out her feeding tube.  

'I had never missed an appointment,' she told People. 'I had never missed an emergency, so getting on that stage took everything in me.' 

The Chicago native said she was particularly inspired by Katy Perry's encouragement.  

She said, 'Katy Perry had told me that I needed to use what I was going through to put a fire under me.

'It was a powerful moment for me to see how music got me through what was happening.'

All three judges voted 'yes' after Althea performed Saturday Morning, an original song that she said she wrote during one of her daughter's hospital stays.  

The single mom said she was touched by the outpouring of support that she received from viewers who were also impacted by TSC.

She told People, 'It made us feel comforted and not alone.' 

Althea also said that the responses motivated her to continue with her career which she had considered giving up to stay home with her daughter. 

Audition: The single mom auditioned during the long-running ABC show's nineteenth season, with her episode airing in March 2021.

The musician said she was aided by the TSC alliance, a non-profit organization that helps individuals and families affected by the disease.

'The Alliance just create this beautiful network where everyone helps everyone else,' Althea told People.

'They got me an appointment for Lennon with the head of the tuberous sclerosis department that I never knew even existed.' 

Support: The single mom said she was touched by the outpouring of support that she received from viewers who were also impacted by TSC

After her liver began to fail, doctors gave Lennon only a few days to live unless she was able to receive a transplant.

The extent of Lennon's liver damage required that the donor be deceased upon learning that a donor liver was available, Althea experienced 'pure joy' before breaking down in sobs for the family who had lost their child.

She said, 'It just hit me. My baby gets to live because another mom just lost hers.

'Being in the ICU is like the happiest moments of people's lives, surrounded by the worst moments of people's lives.'  

Devastating: Althea hit her lowest point when doctors told her that they were unsure if Lennon would survive the surgery

Althea hit her lowest point when doctors told her that they were unsure if Lennon would survive the surgery.

'They told me to say goodbye to her because they didn't even know if she would make it out of surgery' she recalled.

'When she got back from surgery, she was still comatose and had a breathing tube that they might not ever be able to remove.' 

Althea reflected on her daughter's progress since the surgery, telling People  'She's an absolute animal. 

Strong: Althea reflected on her daughter's progress since the surgery, telling People '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.'   

Lennon's doctors at Children's Hospital Los Angeles, Dr. Vijay Vishwanath and Dr. George Yanni praised Althea for her courage and dedication to her daughter's recovery.

TSC has no cure but symptoms can be managed through treatments and medications as well as maintaining a healthy lifestyle.

Ahead of Lennon's third birthday, Althea expressed her gratitude for her daughter's survival and shared her thoughts on how the ordeal changed her priorities.

She said, 'I got to tour a little bit recently and at this point I know anything is possible.

'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.' 

Grateful: Ahead of Lennon's third birthday, Althea expressed her gratitude for her daughter's survival and shared her thoughts on how the ordeal changed her priorities

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American Idol vet Althea Grace speaks out on daughter's rare genetic disorder

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