2012 Family Advocacy Day All-stars

Meet Jonathan L., Chicago, IL

When Jonathan was a newborn he was diagnosed with sickle cell anemia, a blood disorder that causes chronic pain and requires him to spend a great deal of time in the hospital. He is currently treated by the hemophilia team at Ann & Robert H. Lurie Children’s Hospital of Chicago, which he considers his “second home.” Now an outgoing and dynamic 9-year-old with a passion for taekwondo, Jonathan has seldom let sickle cell slow him down. In school, his favorite subject is science, but he also excels in English. A precocious storyteller since he was very small, he’s written and published two children’s books and uses the proceeds to help pay for his school tuition. His second book uses a fictional persona to explore some of the challenges he’s faced in living with sickle cell anemia. In addition to his literary pursuits, Jonathan wants to follow in the footsteps of the physicians that have treated him at Lurie Children’s Hospital; he aspires to be a doctor when he grows up.

Meet Maya C., Miami Springs, FL

Maya was born healthy on May 7, 2010. Nine months later, Maya had a very high fever and her family rushed her to Miami Children’s Hospital at the advice of her pediatrician. There, Maya was diagnosed with acute lymphoblastic leukemia (ALL), a cancer of the white blood cells. Maya then began a two year chemotherapy protocol to treat the disease. Thanks to the efforts of the hospital oncology staff, she is now a strong and healthy 2-year-old. While Maya continues to grow, the battle is not yet over. Although Maya went into remission two months after starting her treatment, she still has almost another year of chemotherapy to fully complete her treatment. Maya’s family members feel very blessed and fortunate to have the support and care of Miami Children’s Hospital helping work for the wellness of their most precious gift: Maya. 

Meet Kyler Q., East Calais, VT

Kyler is an active 8-year-old who lives with his parents and his yellow lab, Rudi. Kyler has spastic quadriplegia cerebral palsy, a severe form of cerebral palsy that affects muscles in his core and all four limbs. Kyler has been receiving treatment at Boston Children’s Hospital since he was 2 years old, and he has an entire team to provide him with care. Kyler’s specialists work together to determine which treatments will keep Kyler able to participate in the activities he loves. Thanks to the excellent treatment he receives at Boston Children’s Hospital, Kyler is able to play sports, work outside with his Dad in the garden, ready wood for the winter, camp in the backyard, and go hunting and fishing. Kyler loves the Red Sox, swimming, horseback riding, skiing, and playing baseball with his friends.   

Meet Leanna H., Hingham, MA

Two years ago, Leanna was a happy teen in good health. During her freshman year of high school her health deteriorated to the point where, in February 2010, she was rushed to Boston Children’s Hospital. There, doctors diagnosed an extremely rare type of tumor on her adrenal gland, a pheochromocytoma. The tumor caused heart problems, temporary loss of vision, exhaustion, difficulty walking, high blood pressure and diabetic symptoms, among other symptoms. Untreated, the tumor would have soon been fatal. Leanna spent five weeks on bed rest at Boston Children’s Hospital and underwent an adrenalectomy, a surgical removal of her adrenal gland. Surgery was followed by a year of recovery and rehabilitation as Leanna worked to regain her health, build strength and walk unassisted. Due to the life-saving care she received, Leanna has resumed playing ice hockey and golf for her junior year of high school. She is an honors student, a member of the Teen Advisory Committee at Boston Children’s Hospital, and a participant in drama and oceanography clubs. 

Meet Carter T., Clarksville, TX

Carter is an archetypical 5-year-old raised in Texas—a cowboy who enjoys chasing ducks, riding horses, working the cows and hanging with the boys. But his lifestyle was jeopardized in November 2010, when he was diagnosed with Precursor B acute lymphoblastic leukemia, an aggressive cancer of the blood. Carter has two types of leukemic chromosomes, a condition which occurs in fewer than 3 percent of patients with leukemia. Since his diagnosis, he has received bone marrow biopsies, multiple lumbar punctures (a procedure used to inject medicine directly into his cerebrospinal fluid), blood transfusions and numerous rounds of aggressive chemotherapy. Thanks to his team of experts in The Center for Cancer and Blood Disorders at Children’s Medical Center Dallas, Carter is in deep remission from his cancer. In order to stay healthy, Carter will undergo treatment for two more years. Meanwhile, he’s back to playing outside on the prairie.

Christopher H., Ft. Washington, MD

Christopher was born preterm at 23 weeks, weighing only one pound, five ounces. Before he was even two weeks old, he had had a heart surgery and a colostomy, a surgical procedure that connects the colon to the abdominal wall. Christopher spent months in the hospital, and was on oxygen for one year. By age 2, Christopher could speak complex words, but would not say “mama” or “dada.” Then he lost all ability to speak. At the age of 4, Christopher was diagnosed with Asperger syndrome, an autism-spectrum disorder characterized by difficulty with social interactions and restricted and repetitive behaviors or interests. After diagnosis, Christopher started therapy at The HSC Pediatric Center, which helped him learn to communicate and gain independence. Now reads at a high school level and continues to improve his socialization skills. He loves sports and is an all-star participant in The HSC Pediatric Center’s Kids in Action adaptive sports program. He also likes to ride horses and read, and is constantly smiling.

Meet Amelia C., Liberty Township, OH

Just days old, Amelia had her first episode of supraventricular tachycardia (SVT), a very rapid heartbeat, measured between 250-300 beats per minute. She was quickly transferred to Dayton Children’s Newborn Intensive Care Unit for treatment. While there, one of the pediatric oncologists noticed a small anomaly on Amelia’s EKG (electrocardiogram). The anomaly was consistent with Wolff-Parkinson-White syndrome, a congenital condition in which the heart has an extra electrical pathway and also one of the most common causes of fast heart rate disorders in infants and children. After a few days of treatment, the Cutters went home with tools and training to monitor Amelia’s health, a beautiful quilt made by a loving volunteer, and their precious little girl. The Cutters manage Amelia’s condition by using a heart monitor at night, by giving her daily beta blockers to control her heart rate, and through monthly appointments with the cardiologists at Dayton Children’s. Amelia is now a smiling little girl who loves to laugh, especially when her parents sing to her.

Meet Julia P., Bayville, NJ

Julia was 6 pounds at birth and seemed in perfect health until checkups at 9 and 12 months revealed a drop in her growth curve. For two years, Julia visited Children’s Specialized Hospital every three weeks as doctors tried to understand her failure to thrive. When the issue became life-threatening, gastro-exploratory surgery revealed that Julia had ulcers caused by food allergies. A children’s hospital nutritionist and feeding team were instrumental in putting Julia back on a healthy growth curve. Once her food issues were resolved, a speech issue emerged. Julia could label things, but could not put words together. Her speech therapist taught her sign language and never gave up on her. At age 5, Julia was able to speak in sentences. At 8 she was diagnosed with central auditory processing disorder, which prevents the brain and ears from coordinating normally. The expert care and patience from the team at Children’s Specialized Hospital not only helped Julia get the nutrition she needed, it also gave her the gift of language. 

Meet Ike L., Upper Arlington, OH

Ike is a healthy, happy 2-year-old boy. In January 2010, when Ike was just 1 month old, he began his relationship with Nationwide Children’s Hospital. He was admitted with RSV (a respiratory infection), strep pneumonia and a collapsed lung. Unbeknownst to his parents, Ike was actually going into septic shock, a serious condition that occurs when infection leads to dangerously low blood pressure. Ike ended up spending nine days in the Pediatric Intensive Care Unit (PICU) where he was placed on a ventilator and 12 machines that provided him with medicine, antibiotics and nutrition. Today, Ike has recovered from the illnesses. He does continue to have respiratory conditions requiring ongoing treatment from the physicians and experts at Nationwide Children’s Hospital. It is those treatment plans that keep Ike healthy and vivacious. Ike, also known as “Hurricane Ike” for his feisty and commanding demeanor, is a twin to his brother, Drake. Ike and Drake along, with their older brothers Kuyper and Duke, enjoy playing all activities that have to do with a ball, club, stick or bat. Many thanks to Nationwide Children’s Hospital for the tremendous care that kept Ike with his fellow teammates…his family!

Meet Tyler F., Medina, OH

Tyler, an active 19-year-old who enjoys spending time with his brother and sister, has overcome many immense challenges. At age 6, Tyler experienced persistent pain in his joints. He was diagnosed with acute lymphocytic leukemia (ALL), a fast-growing cancer of the bone marrow and blood that often results in immune deficiency and pain in the bones and joints. For more than two years he underwent chemotherapy, and the cancer went into remission. Tyler relapsed at age 12 and again at 17. With the help of Akron Children’s Hospital and his sister, Chelsea, who was a perfect match, Tyler received a bone marrow transplant. Following the bone marrow transplant, Tyler was diagnosed with chronic graft-versus-host disease, a condition where the transplanted marrow recognizes the host’s marrow as foreign. Through all of these complications, Tyler never lost his strength. He graduated high school, takes online college courses and still finds time to play his guitar and enjoy recreational sports.