Each year more than 100,000 children and their families
use Wolfson Children’s Hospital.
The following stories tell of Wolfson patients and their families who have faced monumental challenges. Their stories express courage and hope, determination and belief. For each child, there are doctors, nurses, technicians and any other care providers who make up the team at Wolfson Children’s Hospital.
The final component is you, our community of believers and friends, whose unending generosity helps provide the best for our children.
Born in Albania, Anida Pollo came to Jacksonville with her parents, Adelina and Vlzim, when she was five. "We came for our children's future," says Adelina. "We lived a hard life in our country, and we wanted better lives for our children. We wanted them to have a future where they could achieve their dreams." Anida's early childhood was happy, healthy and quite active. She even participated in karate.
But early one morning in October 2008, eleven-year-old Anida awoke complaining of a sharp pain in the backs of both legs. After five minutes the pain became excruciating, and Anida was grabbing her legs and wailing. Not knowing what was wrong, her parents called 911 in a panic. By the time Anida arrived at the hospital almost thirty minutes later, the bottom half of her body was completely numb. "This was completely out of the blue," says Adelina. "The doctors had never seen anything like it before and could not find anything wrong with her. They performed MRIs, x-rays and bloodwork, and nothing seemed amiss, so they thought for a while that Anida was faking the pain. But when they realized she could not move her legs, they knew she was telling the truth."
Doctors consulted a Wolfson neurologist, and after eight hours at the first hospital Anida was moved to Wolfson. After six more MRIs and a very long night, the Wolfson team found the correct diagnosis and Anida's parents were told that their daughter had transverse myelitis, a neurological disorder caused by inflammation across both sides of one segment of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse describes the position of the inflammation; that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body. Normally symptoms of transverse myelitis include a loss of spinal cord function over several hours to several weeks. What usually begins as a sudden onset of lower back pain, muscle weakness, or abnormal sensations in the toes and feet can rapidly progress to more severe symptoms, including paralysis. Anida's case, however, was highly unusual, as it occurred within a matter of minutes. Although some patients recover from transverse myelitis with minor or no residual problems, others suffer permanent impairments that affect the ability to perform ordinary tasks of daily living.
Anida was admitted to a private room and spent the next 21 days at Wolfson. Doctors gave her medication and high doses of steroids, exchanged her blood and even gave her low doses of chemotherapy. While Anida was not gaining back the feeling in her lower extremities, the targeted treatments helped the inflammation tremendously. "I cannot say enough about the doctors and staff at Wolfson," says Adelina. "They gave our Anida the very best medical care. But more than that, they really cared for us as a family. When we cried, they cried with us. Most of them were parents, too, and they just understood. They were really there for us."
After being discharged from Wolfson, Anida went straight to Brooks Rehabilitation Hospital, where she stayed for the next month. "Again, we had the best medical care possible," says Adelina. "They pushed Anida a lot. While she was not gaining any feeling, they helped her to develop her upper body strength and taught her how to take care of herself all over again. And they taught me how to help her. We were in shock as a family, but Brooks helped us deal with this dramatic situation and learn how to cope. We are so grateful."
Finally Anida came home, but she continued her therapy at a Brooks outpatient center almost every day. Even with that challenging schedule Anida managed to finish her school year with straight As and a 3.79 GPA. She started seventh grade this fall at Mandarin Middle School and still does therapy at Brooks five days a week. Anida dreams of becoming a dentist.
"If we had not come to the United States, we would never have had such excellent care for our daughter," recognizes Adelina. "We are very blessed to be here in this country. We came for her future, to help her achieve her dreams, so that she could go to school and do something with her life that we could not do where we came from. We are not ashamed of this illness. We are not accepting it, but we are not ashamed of it. We will fight it until she is well. And we know we have the absolute best medical team possible helping us in this fight. Thanks to Wolfson and Brooks, our daughter can go to the moon if she wants. There is no better place than America."
Charlie Anderson, age 11, was born with a devastating heart defect called Epstein’s anomaly. The right ventricle of his heart had grown into the right atrium, causing his tricuspid valve to be 90% blocked. Given a five percent chance of survival, Charlie was four weeks of age when surgeons at the hospital in his home town installed a shunt to reroute his blood flow and buy time until they could determine what course to take.
At age one Charlie underwent open heart surgery to replace the tricuspid valve with an artificial one, rebuild the right ventricle, and create a small hole in his heart to relieve pressure. A lasso was left in the heart to allow gradual closure of the hole. But the mechanical valve quickly closed off and his doctors were afraid to send Charlie back into surgery so soon, as he was on blood thinners. Eventually they had no choice and this time implanted a pig valve. Over the next few years three such surgeries were necessary. During those years it was discovered that he also had hydrocephalus - fluid accumulation in his brain. It was not clear whether Charlie had been born with this condition or if blood thinners had caused bleeding in his brain, which created the problem. Regardless, surgery was required to install a shunt.
Charlie’s parents then pushed to have him transferred to Wolfson Children’s Hospital. “We were not satisfied with the care that [other] hospital was giving us,” said Charlie’s mother, Tina. “His dad and I knew Charlie needed better medical care, and we found it at Wolfson. He has been there over six years now, and they have been true lifesavers for Charlie and our family.” Wolfson doctors, including heart surgeons, neurosurgeons and electro physiologists, have overseen Charlie’s care ever since. Dr. Eric Ceithaml installed Charlie’s last valve - one with a stent that would hopefully keep the valve open longer.
In January 2007, Charlie’s doctors had done everything possible and told his parents to let Charlie enjoy life and hope new treatment would be devised; however, they did not give up. Sending letters to surgeons around the country, they asked for treatment suggestions and hoped that the rarity and severity of Charlie’s disease might flag the interest of an experimental surgeon. In October, a cardiologist from Miami called to ask the Andersons if they would let Charlie have experimental surgery: a non-invasive procedure done through a neck artery that would replace the tricuspid valve. The valve to be used was made from the jugular vein of a cow and was the closest thing to a human valve yet found. After the surgery Charlie had more energy than he had ever had. “He was the closest to normal we had ever seen,” said Tina. “We were excited. With the shape of the valve and its positioning, and considering it was so close to a human valve, we hoped it would actually grow with him.’ Their elation was short-lived, as within months the valve became infected and was replaced.
For a year all went well, but Charlie began to complain about his heart: pain and “funny” feelings. At age one he had had a pacemaker inserted and one of its wires had just broken, probably due to body growth, causing a heart attack. Emergency surgery replaced the wire.
Charlie is the only child to have lived so long with this condition. Now a fourth grader, he loves fishing, football and is an avid Gator fan. “Charlie is an inspiration to all who know him, especially his family,” said Tina. “I don’t think we could have made it this far without two things: Wolfson and the Lord,” said Tina. “We thank God every day for what He has done. I only wish Charlie could have been at Wolfson from birth!”
Casey Deming
Sponsor: Dr. and Mrs. Jerald H. Pietan
Casey Deming was a healthy, active, 16-year-old sophomore at Episcopal High School when his mom noticed a lump on his neck. "I thought it must have always been there," says Casey, but his mother, Sally, was not so sure and took him to the doctor.
"At first they thought it was an inflamed lymph node, but when it didn't go away they tested it," says Casey. "Then they thought it was cat scratch fever, but I didn't have any other symptoms for that illness. A year after we first noticed it doctors finally biopsied a larger chunk of the lump, and I was diagnosed with lymphoma cancer. I had to ask my mom what that was. She explained, and I said, 'All right, let's just do whatever we have to do and get it over with.'"
The summer between Casey's junior and senior years of high school he underwent about four months of chemotherapy treatments. "It really was a unique experience. The first time I went I had about ten friends go with me. The nurse said she had never seen so many people! We played The Blues Brothers, and when Aretha Franklin sang Freedom! we blasted it and sang along, and that nurse said she definitely had never seen anything like that for sure!"
Casey continues, "I was sick after that first time, but really only that one time. I was really blessed. I always had at least a couple of friends go with me for my treatments. I decided I was going to go into it with a good attitude and keep up my spirits. I have a lot of faith in God, a great family and good friends—it was a very supportive cast. We all had the mindset that it was not going to bring me down."
The doctors told Casey he should not do anything very active until his blood count went back up. An avid surfer, Casey "respectfully declined" that suggestion and surfed his first week of chemo. When he arrived for his next treatment sunburned, doctors were surprised but said if he felt good he could continue to be active. Casey surfed the rest of the summer. "It helped to distract me and really made me feel better."
Casey lost all his hair and was bald for his senior pictures. "But it came back in blonder and curlier, and that was a new look for me." He soared through his senior year, even going to Hawaii during spring break to surf the north shore, thanks to Dreams Come True. "It was an amazing experience that I will never forget."
Dr. Eric Sandler, division chief of hematology/oncology at Nemours, was Casey's primary doctor. "He really helped me a lot. I liked how he gave me the facts in layman's terms, but he didn't stress me out. He was there and encouraged me that I could get through this. He brought humor and joy to the experience instead of just gloom and doom. He always set things up for us and helped us with the financial issues. He saw us all the way through it. He was a real blessing."
Casey, now 20, has received his A.A. from FCCJ and is headed to NYU to study theatre this fall. He continues to receive regular checkups and is now two years into remission.
"I saw another glimpse of life. I have learned that you have to enjoy it no matter what gets thrown your way. I am a firm believer in God, and that combined with the incredible support of my mom and dad and my friends gave me an extra card in the deck." Ever the optimist, Casey Deming leaves no doubt that he is playing a winning hand
Claudiu Fedorca
Little boys and robots were made for each other. Claudiu Fedorca’s favorite robot is the one Dr. Michael Erhard used to save his kidney.
Early this spring Claudiu, age 5, began running a fever and complained of a sore throat and stomach pain. His pediatrician discovered an infection in one of his ears, which contributed to his sore throat. The abdominal discomfort was thought to be a side effect of drainage down his throat. After a two-week course of antibiotics Claudiu’s fever persisted so he was given a different medicine, which finally cured the ear infection and sore throat. Yet the fever continued, as did the belly pain, which his pediatrician now thought were related. During this third examination urine and blood samples were taken and an ultrasound was ordered, to be done immediately. Gheorghe and Maria Fedorca, already very concerned over their son’s prolonged fever, anxiously fought late afternoon traffic as they took their son to Wolfson Children’s Hospital. Upon returning home that evening, weary from a day spent in and out of medical offices and testing venues, the Fedorcas had barely caught their breath when their pediatrician called. Speaking in urgent tones he described the test results: one of Claudiu’s kidneys was enlarged for unknown reasons and it was imperative that the little boy be admitted to the hospital immediately.
This was a situation in which it was vital that no time be lost in treating the child, prompting Claudiu’s pediatrician to directly call Dr. Michael Erhard, Department Chair, Nemours Children's Clinic-Jacksonville and Children's Surgical Services, Wolfson Children's Hospital. Dr. Erhard’s immediate assessment was an obstruction of the kidney with infection present. The infection prevented determining the nature of the obstruction but paradoxically precluded closer examination or surgery. Until that infection was cured a diagnosis of Claudiu’s underlying problem couldn’t be made, yet the kidney had to be enabled to drain. “You have to act within 24 hours or so to prevent further damage”, states Dr. Erhard, “so because he was sick I put in a temporary stent to bypass the blockage”. This procedure became more complicated than usual as it was found that Claudiu’s affected kidney had two ureters draining urine to his bladder. “A double ureter is a normal variant, but in this case it caused a problem”, notes Dr. Erhard.
Several weeks later, after the infection was eliminated, further testing enabled Dr. Erhard to see the cause of the blockage: the kidney was draped over blood vessels, causing them to kink the ureters. To the lay person this might sound like a problem fairly easily corrected - straighten out the kinks, or perhaps pull the blood vessels aside. But first, realize that this is fragile tissue, critical to the life of this child. Then consider the small-scale of the working space - roughly the size of an Oreo cookie, and that the ureters are the diameter of a strand of spaghetti. Also consider that these parts are not presented in a tidy, clean-cut way; they are all covered in filmy connective tissue that must be carefully peeled away before repairs can be made. Such surgery is made possible by a robotic device that translates the surgeon’s movements to a much smaller scale and uses tiny instrument tips: claws, graspers, clips, plier-like tools that hold needles and can also cut sutures - all inserted as needed through conventional laparoscopic surgery incisions. Robotic assistance is a vast improvement over conventional laparoscopy: “From a surgical perspective robotics are tailor-made for this type of surgery”, says Dr. Erhard.
Working from a console across the room, Dr. Erhard used maneuverable arm fittings equipped with button controls and foot pedals to manipulate the arms and instruments that arced over Claudiu’s body. Assisted by table-side doctors who switched instrument tips and provided support action at his instruction, Dr. Erhard spent hours carefully reconfiguring the errant vessels whose tangled arrangement threatened Claudiu’s health.
“He was only in the hospital for two days after the surgery”, reports Gheorghe Fedorca, with amazement. Although his stay was brief, Claudiu’s experience was one that made a lasting impression on him and his parents: the swift diagnosis and action, the kindness of the staff, the miraculous robotics-assisted surgery - and then home again so quickly. It all affirmed the incalculable value of physicians and nurses with the highest expertise, in a setting supplied with the most current technology - Wolfson Children’s Hospital.
Michele Perry
Born a month early on Oct. 17, 1977, at NAS JAX, Michele Perry weighed only 4.4 pounds and had immediately recognizable problems, including one unusually short leg with a clubbed foot and bifed toe, and an incomplete digestive system with abnormalities that left her no way to eliminate waste. The intern who delivered her knew this little girl was facing life-threatening challenges. He emerged from the delivery room quite distressed, telling her parents he had no idea how she could survive with the medical problems she exhibited. Thinking Michele had little time to live, her parents, Diane and Wes, called the Navy chaplain, who arrived in his pajamas to baptize the little girl. Then Michele was rushed by pediatric ambulance to Wolfson's NICU.
"We had no idea that Jacksonville had any kind of medical team in place that could handle Michele's myriad of medical issues," says Diane, "but it did, right there at Wolfson." Wolfson doctors discovered that little Michele's digestive problems and leg malformation were symptoms of greater issues. They found that she had only a small sliver for a femur bone and a knee where her hip should have been and that her orthopedic issues were extensive. They immediately rushed her into surgery to correct her digestive system. Unfortunately Michele's was the first non-successful surgery of this type. The corrected area started to pull apart, and doctors had to create a temporary colostomy to allow Michele to heal properly. The baby stayed at Wolfson for the next three weeks as the area healed, and "you wouldn't believe how we praised God when all of her systems began to function properly!" says Diane.
Doctors then had to develop a plan for Michele's extensive orthopedic issues. Her malformed club foot, her missing hip, whether to consider a prosthesis, and the developing scoliosis all had to be considered. "We sought opinions from many hospitals in other states," says Diane, "because who would have thought that Jacksonville would have the expertise necessary to deal with medical problems of this magnitude. But once again, we were thrilled to find that everything we needed was right here." After having her small foot amputated, Michele faced extensive rehabilitation and therapy. "It was not easy having a nine-month-old in diapers and trying to maintain a plaster cast," recalls Diane.
Michele then underwent a series of spinal surgeries to implant temporary rods. She had to wear a body jacket in combination with a prosthetic leg, which was difficult, so she started using crutches. As Michele grew, Wolfson doctors periodically went back in to extend those rods to match the growth of her spine.
At age eight Michele had a bout with a virus resulting in extreme dehydration and subsequent hospitalization. Just before being released the little girl complained of back pain. Doctors ordered an x-ray and discovered that her left kidney was missing, and her right kidney was enlarged and endangered. Wolfson doctors performed a right polyplasty, which ensured that her only kidney was saved.
Overall Michele underwent 23 major surgeries from birth to age thirteen, almost all at Wolfson. For her last surgery doctors performed a spinal fusion and inserted permanent steel rods to maintain stability for her spine. "She has had no problems with them," says Diane, "and has even three-track snow skied and has swum with dolphins! We are so grateful to Wolfson for their years of excellent care for our daughter. Every medical need Michele had was met at Wolfson."
But this little girl's story does not stop there. Michele went on to receive the national "Yes I Can!" Award, as well as the Channel 12 "Kids Who Care" Award, and she was a Youth Leadership Jacksonville graduate by age fifteen. She also became the spokesperson for the Florida/Georgia Blood Alliance, appearing on billboards throughout the region. A star student, Michele was graduated from Orange Park High School with a 4.6 GPA and top honors in science. Intending to study pre-med, she went to Baylor University in Texas, where she became active in ministry to inner city children and homeless people. During this time Michele felt called to full-time ministry, and after college she spent two years in India, bringing a message of hope and worth to children in leper colonies. Eventually Michele met the founders of Iris Ministries, and in 2006 she headed to Africa, where this one-legged, indomitable young woman single-handedly started an orphanage in the city of Yei that now serves close to 100 at-risk, abandoned children orphaned by the Sudanese war. Michele calls them her "family," and they call her "Mama." In addition, she has started a "Dream School" for almost four hundred children from both the community and her orphanage, and she has helped to train indigenous pastors and plant more than ten churches in the region, two of which also have children's care facilities. On top of all this, she teaches Bible classes to the local police department, ministers in the prisons and maintains speaking engagements around the world. Her first book, Love Has a Face, has just been released by Chosen Books and is available in bookstores and at Amazon.com. It also is being released in audio form and narrated by Australian Christian singer Rebecca St. James.
The little girl whom no one thought would even survive a day is now 32 years old and reaching children and adults across the world with a message of life and hope. Indeed, Michele Perry is a young woman with an indomitable spirit and is a living example of how helping one child truly does pay it forward.
For more information on Michele Perry, go to her blog at http://lovehasaface.blogspot.com or her website at www.iris-sudan.org. Michele also has a Facebook page with regular updates, and all sales from her book support her work in Sudan, Africa.
Benefiting Wolfson Children's Hospital
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call...904.202.2886 or
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