Every day, 13-year-old Hana Hwang listens to the Selena Gomez song, “Who Says,” on her iPod shuffle.
I’m no beauty queen. I’m just beautiful me.
You got every right to a beautiful life.
These words inspire Hana and help distract her from the painful physical ailments associated with progeria, a rare fatal genetic syndrome. Like the main character in “The Curious Case of Benjamin Button,” individuals living with progeria exhibit premature aging symptoms.
Children affected by the disease age eight to 10 times faster than the average person and there is no cure at this time.
Her tutor, Sara Kim, nominated Hana and her family as recipients for the KISSMAS Giving campaign on L.A.’s 102.7 radio station in Los Angeles. Sara requested a care package and a Kindle for Hana, an avid reader.
However, when Ryan Seacrest learned that the 13-year-old Children’s Hospital Los Angeles patient is a devoted Selena Gomez fan, he immediately reached out to the young star. On Dec. 13, Gomez took a break from recording her album to fulfill Hana’s lifelong dream by visiting her bedside.
During Selena’s visit at Children’s Hospital Los Angeles, Hana said she was determined not to cry in the presence of her idol because she “didn’t want to look like a baby.” Now, despite the physical pain, Hana is writing a letter to Gomez to tell her all the things she wished she’d said during the pop star’s surprise visit.
The life expectancy for an individual with progeria is 13 years. In September, Hana celebrated her thirteenth birthday and doctors at Children’s Hospital Los Angeles are working hard to extend her life. Despite her prognosis, she continues to read, listen to music and live a beautiful life—one moment at a time.