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NACHRI & N.A.C.H.
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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,... Continue reading
Posted Jun 29, 2012 at 2012 Family Advocacy Day All-stars
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Robert is a happy, healthy young man who enjoys spending time with friends. Looking at him now, it is hard to believe that on October 2, 2008, he was diagnosed with acute myeloid leukemia (AML), a cancer of the myeloid blood cells that is characterized by rapid growth of abnormal... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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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... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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Claire is an energetic girl who loves horses, nature, art and the piano. She was born six weeks premature with a cleft lip and palate. Three days later, she was diagnosed with autosomal recessive polycystic kidney disease (ARPKD) and congenital hepatic fibrosis (CHF). The prognosis was grim; doctors initially believed... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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Gage is a happy, healthy 17-year-old who has spent much of his life at Kosair Children’s Hospital, first as a patient and then as a volunteer. In 2004, Gage was diagnosed with hydrocephalus, an accumulation of fluid in his brain, and needed surgery to have a shunt placed to drain... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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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... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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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).... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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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,... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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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... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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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.... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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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... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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Nicholas is a 14-year-old veteran of Boston Children’s Hospital. He first arrived there by ambulance when he was just 12 hours old. Nicholas was born with Down syndrome, a genetic condition caused by having an extra chromosome, as well as a heart defect that resulted in a pair of surgeries... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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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,... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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Alexa is a beautiful 20-year-old college student. Seeing her today, it is hard to believe that just two years ago, Alexa was in a horrific car accident while on her way to take the SAT. She was airlifted to Stony Brook Long Island Children’s Hospital, where it was determined that... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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Hunter is an active, energetic 17-year-old who loves to play football. Watching him kick the game-winning field goal against a key division opponent, no one would guess that Hunter wasn’t always so healthy. When he was a newborn, his family noticed that he had difficulty breathing and he was soon... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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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... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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Simone just turned 3 years old and has already had quite a few challenges. She spent her first 13 months in the hospital, and has had several more visits this year due to various illnesses and for surgeries due to craniosynostosis, a skull deformity; tracheomalasia, a floppy airway; and cystic... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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Mia was a happy, apparently healthy baby girl. However, as she reached toddlerhood, Mia’s family noticed that her language skills weren’t developing normally. She was also more active than either of her siblings and she seemed to constantly crave pressure on her body. She often jumped and bounced, creating pressure... Continue reading
Posted Jun 25, 2012 at 2012 Family Advocacy Day All-stars
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When Chloe was born, she was rushed to the intensive care unit for tests because the doctors could tell something was amiss. Chloe was diagnosed with persistent truncus arteriousus, a rare congenital heart defect where the arteriousus blood vessel never properly divides into the pulmonary artery and the aorta, preventing... Continue reading
Posted Jun 22, 2012 at 2012 Family Advocacy Day All-stars
Mike is an amazing 14-year-old with an equally amazing attitude towards life. He loves engineering, magic tricks, listening to music, and playing trumpet in a jazz band. Mike suffered from debilitating headaches for more than a year. His family attempted to get appointments with psychologists and neurologists but were faced... Continue reading
Posted Jun 15, 2012 at 2012 Family Advocacy Day All-stars
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On the outside, Lucy is a funny, sweet, feisty little girl who loves making up dance moves and wearing fabulous bows in her hair. On the inside, the 4-year-old has an amazing strength of will. At age 2, Lucy began a battle with B-precursor Acute Lymphoblastic Leukemia, an aggressive cancer... Continue reading
Posted Jun 8, 2012 at 2012 Family Advocacy Day All-stars
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Caroline is a charismatic 16-year-old who enjoys art, music, and socializing with her friends. When she was 9 years old, Caroline was diagnosed with limb-girdle muscular dystrophy, a form of muscular dystrophy that causes severe muscle weakness, especially in the shoulders and hips. Concerns with physical stamina and speed brought... Continue reading
Posted May 25, 2012 at 2012 Family Advocacy Day All-stars
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John is a healthy, handsome 14-year-old who likes fishing; playing football, soccer, and baseball; working on the computer; and making movies on his iPad. John was born deaf and learned American Sign Language to help him communicate. Though he could communicate with others, John wanted to hear sound. At the... Continue reading
Posted May 25, 2012 at 2012 Family Advocacy Day All-stars
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Max is a spirited 7-year-old boy who loves to act, swim, golf, play baseball and pal around with his brother, Ellison. Max is witty and wise. He was born with a heart defect – Tetralogy of Fallot – that requires him to wear a pacemaker. His family calls him “Turbo”... Continue reading
Posted May 18, 2012 at 2012 Family Advocacy Day All-stars
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Rebecca has a chromosome abnormality so rare that in 2007 she was the only reported case in the world. Since her diagnosis, there have been two additional cases identified. Rebecca has remained resilient despite the serious complications associated with her condition which led to 16 hospitalizations in 22 months. While... Continue reading
Posted May 11, 2012 at 2012 Family Advocacy Day All-stars