Last year, seven-year-old Joey Finley sang Christmas carols for the first time in his life. For most parents, this would be uneventful, but for Joey’s mom, Melanie, it was a breakthrough.
Joey was literally silenced all these years because of a rare disease called recurrent respiratory papillomatosis (RRP). The disease allows tumors to grow in the respiratory tract, and is caused by the human papilloma virus (HPV). Currently there are 20,000 active cases in the United States.
Although the tumors mostly occur in the larynx on and around the vocal cords, these growths may spread downward and affect the trachea, bronchi and sometimes the lungs, obstructing breathing. RRP papillomas are the same tumors that cause cervical cancer. There is no cure for RRP. And left untreated, the lesions may grow and cause suffocation and death.
Initially, doctors confused Joey’s RRP symptoms with pediatric GERD or acid reflux disease. Since Joey was two months old, he’s been in and out of hospitals, OR’s and doctor’s offices, and had more than 60 surgeries to remove the tumors on his vocal chords.
RRP adversely affected Joey’s speech. He began compensating for the “frogs” as he called them, by using other vocal muscles to talk.
When Joey met Edie Hapner, PhD, a speech pathologist at the Emory Voice Center, she says he sounded “like a little old man.” His voice was very raspy like that of a 60-year-old smoker.
After several speech therapy sessions at the Emory Voice Center with Dr. Hapner, Joey is a normal sounding child. Joey now sings in the school chorus and takes gymnastics and swimming lessons. It’s hard to imagine these activities for a child that not so long ago had trouble breathing because of HPV tumors blocking his airways.
Read more about Joey’s journey to ‘find his voice’ and hear him speak in the new issue of Emory Health magazine.
Listen to Emory patient Karon Schindler recount her experience at the Voice Center.