There are so many reasons to support the Steele Center at the University of Arizona. Medical research paves the way to better health for all of us. It's the only way to develop new treatments and cures for diseases.
But for the researchers at the Steele Children's Research Center, who also are pediatricians, the very best reason to support our work is the children. As researchers, they search endlessly for answers to medical mysteries. As physicians, they work to ease the suffering of children. Here are some stories - children whose lives have been changed because of the work of the Steele Center and children who remind us how far we have to go.
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 will 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.
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.
Researchers at the Steele Center are working to better understand the immune system to see what allows neuroblastoma cells to grow out of control. They're also developing "smarter drugs" - drugs that target cancer cells selectively without damaging surrounding healthy cells. The goal is to develop more effective treatments and eventually a cure for neuroblastoma.
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.
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 some day 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.
Kevin is the picture of health, but it's a deceptive picture. He appears to be a lively, enthusiastic 12-year-old, but in fact, he has end stage renal disease. His kidneys don't grow with him and don't function normally. Eventually they'll shut down and he'll need to go on dialysis or receive a kidney transplant. Both mom and dad are willing to donate a kidney to Kevin when the time is right, but the waiting takes its toll.
"His doctors have told us that kids like Kevin usually burn out their kidneys during puberty," says Claudette Kayne, Kevin's mom. But no one knows for sure when it will happen. His doctors do know that his kidney function is deteriorating. Mom says he's tired at times, but that hasn't kept him off the soccer field.
Researchers at the Steele Center are helping to improve outcomes for children like Kevin. One researcher is working to identify kidney disease in its early stages (when it often is reversible) and to create intervention programs to slow or reverse the progression of renal disease. Another project is designed to prevent anemia in children after transplantation, which can be a problem for children who receive a kidney transplant.
Karen and Ivan Miller had every reason to expect that their first-born would be healthy and that Karen's pregnancy would take the normal 40 weeks. But mid-way through her pregnancy, Karen developed pre-eclampsia, a high blood pressure condition that can be dangerous to mom and baby. Despite the best medical technology, baby Lomax was born 11 weeks early, weighing only 2 pounds and 10 ounces.
"It was up and down the first four to five weeks," says Ivan Miller, Lomax' dad. "It wasn't easy." Imagine a 2-pound baby on a ventilator with three tubes sticking out of his tiny chest to understand what Lomax' parents went through. The baby was on a ventilator for 7 weeks. He received five blood transfusions.
After 10 weeks, he was stable and went home to his very relieved parents, weighing 4 pounds and 5 ounces. He brought lots of medical issues home with him. All are being resolved with medical attention, time, and lots of love. Today he's a healthy 2-year-old. He's finally made it on the growth chart - the fifth percentile - a statistic his parents are happy to report.
Researchers at the Steele Center are working on new and better ways to take care of premature babies. One researcher is developing a way to stimulate red blood cell production in premature babies, so they wouldn't need transfusions. Another is learning more about the growth factors to try to make the formula we feed to premature babies, more like mother's milk.
Meaghan may not look like a pioneer in alternative medicine, but in fact, she is. Like many little kids, Meaghan was plagued with nearly constant ear infections. Like most children, she was treated with antibiotics. But Meaghan's mom, Liz, learned about a clinical study testing alternative therapies to prevent ear infections and decided that Meaghan should participate.
"I know that people can build up a resistance to antibiotics and that ear infections can become drug-resistant" Lucas says. "I was interested in a different way to treat ear infections without medicine."
Researchers at the Steele Center are testing the herb Echinacea and osteopathic manipulation to see if either can prevent recurring ear infections. the study is still in progress so the results are not known. But for Liz and Meaghan, the answer is clear. "She didn't get a single ear infection the whole time she was on the study." but neither she not the researchers will know if Meaghan received Echinacea or a placebo until the study is complete.
Before Patrick's mother, Ana Maria, found a pediatric lung specialist to care for her son, "asthma was controlling our life," she says. "Now we've learned how to live with asthma." Diagnosed when he was just 12 years old, Patrick's asthma is severe. "When he was young, I couldn't work. His lung collapsed twice. He was in the ICU several times. I never knew when the next shoe was going to drop."
Now 14 years old and a patient of the lung specialists at the University of Arizona, asthma doesn't keep him from doing the things he likes - bike riding, playing baseball and basketball. He takes inhaled steroids and uses an inhalant when he needs it. This summer he took a trip to England and mom made sure that he had all his medicine, original prescriptions in case he lost his medicine and referrals to English doctors. The only thing they hadn't planned on was national "Mow the Lawn Day" in London, which made Patrick sick.
Researchers at the Steele Center are working to better understand asthma. In collaboration with Arizona Respiratory Sciences Center, they are trying to determine the genetic cause of asthma and testing new drugs to help children with the disease. Researcher also are trying to understand what factors early in life promote or protect a child from developing asthma.
When Savannah Hopkins was 6 months old, her mom says she was "chubby as anything with all kinds of rolls on her legs." But her weight started dropping and by the time she was 9 months old she had dropped off the growth chart. She was also breathing very fast, 80-90 breaths a minute (40-50 is the normal range).
The doctors ran all kinds of diagnostic tests. Finally a team of pediatric pulmonologists and gastroenterologists determined that Savannah had gastroesphageal reflux syndrome. When she slept, the contents of her stomach were flowing into her esophagus - some of it ending up in her lungs.
Now, with the proper medication, she's getting back on track. Her weight is up 20 percent in the three months since she was diagnosed. At 18 months, she weighs in at 18 adorable pounds.
Researchers at the Steele Center are learning more about intestinal disorders in children. Researchers in pulmonology are learning more about lung disease in children - what causes it, how to treat it, and how to prevent it. What our researchers learn in their labs has direct application to patient care, which is a real benefit for little people like Savannah and the parents who love them.
When Fred Gordon was 8 months old, he was happy and healthy. Until one day when "he seemed too calm", says his mother Ruth.
He wasn't eating or drinking and by evening she was worried. A trip to the emergency room in Sierra Vista turned into a helicopter ride to University Medical Center for baby Fred. He was diagnosed with cardiomyopathy - a disease that can destroy the heart muscle. During the weeks spent in the UMC Pediatric Intensive Care Unit, his parents didn't know what his outcome would be. But, he did well and doctors say that now his heart seems normal. It was an experience that Mrs. Gordon hoped she'd never have to live through again.
But a year and a half later when her second son (Willie) was born, he was diagnosed with a heart defect - mild pulmonary stenosis. (His pulmonary valve was slightly constricted.) A follow-up visit four weeks later showed severe pulmonary stenosis that required immediate attention. Baby Willie underwent a pulmonary balloon valvuloplasty, a procedure in which a balloon is inserted to open up the valve.
Clinical trials have created advances in medical procedures such as the one used on little Willie. Research at the Steele Center is helping pediatricians better understand how heart valves function and how to correct defects.
Both boys are doing well. The UA pediatric cardiologists check on them every few months when they hold clinics in Sierra Vista.