Little Kayla was born with a hole in her heart and needed open-heart surgery when she was 3 months old. Her condition, called endocardial cushion defect, occurs in half of all babies born with Down syndrome. Problems with heart valves meant two more surgeries before her first birthday. It was an ordeal her parents, Cathie and Joe Bernardi, wouldn’t wish on anyone. But they were pleased that Kayla’s care was provided in an academic setting at University Medical Center.
“Since the physicians there are always studying new things, we felt like we were getting the very best medical knowledge..” says Cathie Bernardi.
Steele Center Scientists are learning more about how heart valves develop, which genes regulate heart valve development and what causes them to go awry. It might be possible someday to correct a defective heart before the baby is born.
Kayla is now 5 and enrolled in pre-kindergarten. She likes playing with her baby brothers, riding her tricycle and learning to swim. She regularly wins the hearts of all who meet her.
Courtney Zillman was diagnosed with neuroblastoma when she was 9 months old. Cancer became a way of life to her and her family. She once was overheard telling a neighborhood friend, “I can’t come and play today, I have cancer.”
Her cancer was in remission once, then she relapsed and required a bone marrow transplant. A few months after that her cancer returned and pediatric oncologists at the Steele Center were out of treatment options.
Courtney died on Thanksgiving Day. She was 4 years old.
Nothing in Amanda’s 10 years led her parents or her pediatrician to believe that she would develop juvenile diabetes, the most common chronic disease of childhood. But two years ago they got the news that changed their lives. Now 12, Amanda is coping well with the stress of managing diabetes, but has good days and bad days, says her mom, Aida Halawani.
“She looks fine on the outside but I know this disease can affect her eyes, her kidneys, and her heart. We pray for better treatments and a cure for juvenile diabetes.”
In Arizona, one in 400 children suffers from juvenile diabetes. Among Hispanics and Native American children, the incidence is even higher – nearly twice the national average. A new program at the Steele Center will offer comprehensive care for children with diabetes, explore the genetic causes and begin research to test new therapies to take better care of children with diabetes.
Leanne Farr of Mesa (Jacob’s mom) thought her 2-year old had chronic allergies. What he had was a rare and aggressive form of cancer – acute non-lymphocytic leukemia (ANL) – and only a 25 percent chance of surviving.
Doctors began chemotherapy immediately and began making plans for a bone marrow transplant. Fortunately, Jacob’s sister was a perfect match to donate bone marrow. And fortunately, Leanne learned of a new experimental transplant procedure that could be done without radiation at the Steele Center. Even still, it was a difficult procedure and a long ordeal.
Jacob is now 7 and in good health. He enjoys Karate and playing with his three sisters. Advances in medical research have made it possible for Jacob (and his family) to live a normal life.
