Natalee Amos is not your average 11 year old girl. She is above average, extraordinary, with dreams and visions, taking her ambitions to another level. Although she has been challenged with an illness called tuberous sclerosis, she is not letting the diagnosis slow her down, but is doing the very opposite. Her doctors refer to her as a genetic mosaic, Natalee explained, stating, “They say my pieces don’t fit into one diagnosis, I am one of a kind.” Natalee has chosen to join Pedal the Cause and ride for cures, treatments and hope.
Natalee has been nominated to be an honorary captain and spokesperson for Pedal the Cause. Natalee is joining the Bartlett’s Bikers team which consists of patients, survivors, doctors, nurses, research assistants, friends and family. The Pedal the Cause organization raises funds for cancer research with 100 percent going towards research at St. Louis Children’s Hospital and at Siteman Cancer Center.
Natalee has planned her first fundraiser during the Monroe City Stroll on August 17. Her Pedal for Cause booth will be set up on Main Street in front of the Main Street Thrift Store. Natalee will be selling raffle tickets for three prizes including a cooler filled with bacon, hamburgers and pork burgers, two outdoor freestyle rocker chairs and two yeti cups. The raffle winners will be drawn on Labor Day.
Natalee was diagnosed with tuberous sclerosis after a bike accident in August 2015. Tuberous sclerosis is a rare condition that results in “benign” tumors growing in the brain and other organs. Natalee shared, “The tumors form in my body and then disappear. The tumor that has formed in my brain is rare to my disease.” Natalee shared she has symptoms of tuberous sclerosis, but it is not actually tuberous sclerosis, stating, “That is the diagnosis I have because they have never seen another case like mine.” After the bike accident, she had a loss of feeling and movement in her right hand a couple of days later.
After several weeks of therapy with no improvement and the appearance of new problems with her right leg and gait, she was referred to a neurologist at St. Louis Children’s Hospital. An MRI in November of 2015 revealed a brain tumor. She had an MRI guided laser ablation done in January 2016, where they were able to ablate 90 percent of the tumor. Natalee shared, “The ablation really saved my life. This is one reason I want to be a part of Pedal the Cause because the research they have done helped me.”
The tumor was stable until March of 2017 when it began to grow. Natalee underwent chemo from June 2017 though January 2018. Natalee explained, “I had a really good year after we were able to stop the chemo.” The tumor remained stable until March of 2019 when it started to look suspicious, so she started oral chemo in March. She has physical and occupational therapy five times a week and cannot do many of the activities her friends do because of weakness in her arm and leg. Natalee explained, “I love to swim.” Natalee continues to do well in school and continues to improve at therapy, where she is learning to do things with one hand and maintain her independence. She shared, “I would like to be able to ride a horse by myself.”
Natalee is the daughter of Keith and Terri Amos, and is the youngest of three, with sisters Karli, 19, and Haleigh, 17.