Monday, December 10, 2012
Addy’s Story: Discovering the Right Treatment
Amy and Brian Kelley brought home their beautiful blonde haired, blue eyed newborn, Addy. She had only been home a week when her pediatrician called to say that some of Addy’s tests had come back abnormal. She was soon diagnosed with cystic fibrosis, a genetic, chronic condition that affects the lungs and digestive system.
Addy and her parents’ lives would change forever. When you meet Addy, you would never know that she has a serious condition. She likes to run and play like many kids, and she loves soccer and playing with her big sister and cousins. However, while the rest of her friends play outside, Addy needed to be inside for her breathing treatments and chest therapy — twice a day, every day. Her father describes their days as very tightly scheduled.
“We try to keep Addy’s life as normal as possible by engaging in various activities,” said Brian Kelley, Addy’s dad. ”It can be difficult to try and fit in school, homework, practices, treatments and bath time all in one day.”
Dr. Joel Schmidt
, pediatric pulmonologist with Children’s Hospital of Richmond at VCU
, specializes in cystic fibrosis and is one of Addy’s doctors. From day one, Dr. Schmidt and his team have helped educate Addy’s family, babysitters and others in Addy’s life about cystic fibrosis. They also made it their goal to discover ways to make sure cystic fibrosis would not get in the way of Addy’s childhood.
“Dr. Schmidt and the staff of Children’s Hospital of Richmond at VCU are like family to us,” said Amy Kelley, Addy’s mom. “To have such specialized care close to home has been a godsend.”
Just after Addy’s first birthday, Dr. Schmidt and his team learned about a clinical trial involving a small number of patients that demonstrated the ability to cure a specific form of cystic fibrosis.
There was only one problem — the treatment was for patients over the age of six. Dr. Schmidt worked tirelessly to get Addy approved for this treatment, including reaching out to the president of the Cystic Fibrosis Foundation
and the insurance company to ensure Addy had access to a drug that would change her life.
“From day one, Addy stole everyone’s hearts,” said Dr. Schmidt. “We wanted to see Addy laugh and play, and we worked to make sure Addy had the most advanced treatment and care possible.”
Dr. Schmidt and his team’s dedication and determination paid off. Addy was approved to take the drug, and although she has been on the medication for only a few months, Addy’s test results have improved dramatically. Her lung function has increased by 20 percent, and her sweat tests have come back completely normal. Children’s Hospital of Richmond at VCU improved Addy’s quality of life beyond what her family could have imagined. She will still have to take medication every day, but she has fewer limitations and a much brighter future.
“Children’s Hospital of Richmond at VCU is so invested. There is hope for a cure, and we’ve come so far in the last 50 years. We can truly see the light at the end,” said Brian Kelley. “I want to walk Addy down the aisle one day and see her and her sister stay close for the remainder of their lives. That’s all a parent can ask for.”