July 13, 2021 -- Texas teenager Hannah T., a recent high school graduate, did not grow up with many friends. Instead of playdates with other children, she spent her days being entertained by the medical students and doctors who helped treat her.
Hannah -- who asked that her last name be left out of this story -- was diagnosed with the terminal and life-threatening genetic disorder cystic fibrosis just weeks after she was born. Though the illness often affects the lungs, she has mostly had persistent sinus infections and digestive problems that required multiple hospital stays.
Now, she is raising money to someday care for patients like herself.
Hannah started a GoFundMe for her upcoming undergraduate education at the University of Texas at Dallas with the ultimate goal of attending medical school.
“My parents have sacrificed their entire life savings to care for me and my sister, who also has cystic fibrosis,” she says. “Even undergraduate tuition is astronomically expensive.”
According to Hannah’s GoFundMe page, her family is in medical debt that has prevented her from taking out loans for school. So far, she has been unable to secure a scholarship.
“I have applied to every single scholarship under the sun and haven’t won anything, and my financial aid won’t cover the year,” her page says. “It is my only wish in life to pursue my education in order to become a physician [to] be able to give back to my community in the ways it once helped me.”
There is not yet a cure for the disease.
Hannah says she has mild to moderate cystic fibrosis caused by mutations of the delta 508 and R117H genes. Her maternal grandmother also had it.
“I’m on medications that have improved my quality of my life, but there's still no cure,” she says. “Unfortunately, while technology is advancing, I don’t think I will see a cure in my lifetime.”
According to the Cystic Fibrosis Foundation, more than 30,000 people are living with the disease in the United States. About 1,000 new cases are diagnosed each year.
Having a chronic illness may make it easier for her to talk to and relate to her future patients, Hannah says.
“Bedside manner is so important,” she says. “Just being able to talk to the patient and develop relationships with them.”
So far, Hannah has raised $265 of her $9,000 goal. But she admits that asking for help has been a struggle.
“I feel embarrassed that I've had to ask others for help,” she says. “I appreciate those who've helped, and I've received some amazing support. I’m very thankful.”