Meet Christian: 2022 Family Advocacy Day Champion
Christian is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Christian and his family will discuss his health journey, Connecticut Children’s Medical Center’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Christian.
When Christian was born the whites of his eyes had a bluish grey tint. He was diagnosed with osteogenesis imperfecta, a genetic bone disorder also known as brittle bone disease.
“Christian’s dad, John, also has osteogenesis imperfecta,” says Susan, Christian’s mother. “So we always knew there was a chance he could have it as well.”
When Christian was six weeks old the family had an evaluation performed at the genetics department at the University of Connecticut, which confirmed a diagnosis of type 1 osteogenesis imperfecta.
“Because of the genetic link, we had time to research osteogenesis imperfecta,” says Susan. “We had to get used to the fact that our family would be faced with the lifelong impact of this disease. It did not make it any easier, but it certainly helped us to be well informed.”
The family wanted to be proactive with Christian’s care and provide him with any resources, procedures, therapies, or medications that could help him to lead a happy and healthy life.
Christian had his first fracture to his left arm at six months old while he was attempting to sit up. There have been many more fractures since then and three of them have resulted in surgeries to repair the bone or implant hardware for stabilization. Each fracture requires an ER visit, X-rays, sedation, casting, surgery, and often physical therapy.
For ongoing care, Christian receives pamidronate infusions every six months, which help with bone density, reabsorption and formation.
“The opening of the brand-new infusion center a few years ago has been most exciting for our family,” says Susan. “ Previously, an infusion was a day long affair at the main hospital, in a patient room on the sixth floor. Now, infusions are quick and easy at the Farmington facility.”
Currently, Christian is 17 and doing well. He enjoys theater, singing, video games and cars.