Joey was saddled with his nickname “Peanut” before he entered the world. At six weeks old, Joey was still at his birth weight, with a diagnosis of “failure to thrive.” Days later, Joey was transferred to the children’s hospital where he was diagnosed with cystic fibrosis, a lung and digestive disease that afflicts approximately 30,000 people in the United States.
At seven, Joey is a healthy cystic fibrosis patient, but that requires a lot of work from a lot of people EVERY DAY. Each day begins with inhaled antibiotics, chest physiotherapy, oral antibiotics, nasal sprays, inhalers, and a nasal rinse. Throughout the day, Joey coughs to clear his lungs and move the thick sticky mucus that coats his airways and prevents him from breathing freely and ever being free of the germs living within him. Joey needs 20 enzyme pills during the day and at night a feeding tube get him the rest of the calories he needs to survive and grow. Joey is treated at the Medical University of South Carolina (MUSC) Children’s Hospital.
Joey and his family are going to DC with members of MUSC Children’s Hospital on Monday June 14th for a week to meet with the SC Delegation on behalf of children’s hospitals and health care reform. We will be participating in the National Association of Children’s Hospitals Family Advocacy Day where children’s hospitals from around the country bring a family to represent them in DC and advocate on the importance of funding pediatric hospitals.
In most ways, Joey is like any other seven-year-old. He loves Legos, soccer and math, but his biggest passion is helping other kids. He has been lucky enough to bring attention to others and raise funds for cystic fibrosis research through radio and TV appearances. Peanut was also selected as the billboard model for MUSC Children’s Hospital’s license plate. Joey has been an advocate for other children since he was two years old, raising money and awareness for cystic fibrosis.
Listen below for his interviews with Brooke Ryan from 2 Girls and a Guy Morning Show:
Dr. Isabel Virella-Lowell from MUSC Children’s Hospital treats Joey for cystic fibrosis.