2010 Family Advocacy Day All Stars

Meet Zebediah K., Dummerston, VT

Zebediah is a charismatic, kind, adventurous boy who loves to build intricate Lego structures, play with his dog and eat non-dairy chocolate ice cream. At a very young age, he was diagnosed with severe sleep apnea and alveolar hypoventilation syndrome. Believing that he needed to go to a hospital that dealt specifically with children’s health care issues, Zebediah’s parents took him to Children’s Hospital Boston. There, he has endured multiple surgeries and receives treatment for breathing problems, sensory issues and sleep deprivation. Despite Zebediah’s very unique health issues, his family feels that Children’s Hospital Boston has given them the gift of hope and that his challenges will soon be resolved.

Meet Madeleine M., Plainfield, CT

Seven-year-old Madeleine was born with medical complications resulting in problems with her stomach, bladder and kidneys. Her first surgery took place when she was only 8 days old. In 2007, Madeleine received a kidney transplant that was quickly rejected. While her initial prognosis indicated that she would never talk or consume food orally, she is chatty little girl and eats normally. Despite her progress, Madeleine is still in and out of the hospital on a regular basis. Thankfully Madeleine has Yale-New Haven Children’s Hospital in Connecticut to provide her with the specialized medical care and support services that enable Madeleine and her family to cope with her numerous hospitalizations. Madeleine’s accomplishments, strength and courage are an inspiration to everyone who meets her.

Meet Joseph H., Nashville, TN

Joseph was diagnosed with Chediak-Higashi syndrome when he was just 6 months old. It is an extremely rare and life threatening genetic disorder that can leave a child with virtually no

functional immune system. A bone marrow transplant was his only hope for survival, but Joseph’s blood type was so rare that there was only one match out of 5 million candidates in the bone marrow registry. Just one week after his first birthday, doctors at Monroe Carell Jr. Children’s Hospital at Vanderbilt performed the bone marrow transplant that saved Joseph’s life. While there is a chance he may develop some neurological problems as he ages, there is little to no chance of him relapsing. Joseph’s mom credits the hospital for the care it provided to the entire family throughout the ordeal.

Meet Charlie D., Falls Church, VA

Charlie doesn't follow the rules. At 18 weeks in utero, he was given a fatal diagnosis of hydrops fetalis and was later diagnosed with Down syndrome. Upon being born, Charlie was sent home with oxygen tanks, monitors a series of new diagnoses including severe tracheomalacia and chronic atalectasis. Despite his ongoing health issues, Charlie enjoys many of the same activities that other children do thanks in part to the care that he has received at INOVA Fairfax Hospital for Children and the care he receives at home from a live-in nurse. Charlie loves to spend time with his family, visit grandparents, go to school, watch movies, play outside and read books. An accomplished advocate, Charlie has made several visits to Richmond to advocate for in-home care. His passion of in-home care has taken him as far as New York for an appearance on a Geraldo Rivera Show segment focusing on closing institutions and the value of living at home with a nurse.

Meet Mason H., St. Petersburg, FL

Mason appeared to be a perfectly healthy baby when he was born in August of 2005. But by his first birthday, Mason was having trouble meeting normal developmental milestones. A CT scan showed that Mason had a benign cyst in his brain that, thankfully, has shown no signs of growing in subsequent examinations. Diagnosed with mild hypotonic cerebral palsy, Mason receives outpatient occupational and physical therapy at All Children’s Hospital. As a result, his proud mom says most people think Mason is just like all other kids his age, except cuter.

Meet Robert G., Palo Alto, CA

Robert is a healthy, active and academically accomplished sixth grader. He was born six weeks premature at a children’s hospital on the east coast and moved to Palo Alto when he was 2 years old. Since then, he has been receiving primary pediatric care through the clinic at Lucile Packard Children’s Hospital. Staying healthy is important to this 12-year-old, who balances a rigorous soccer training schedule with schoolwork and downtime. So Robert takes advantage of the educational programs offered at Lucile Packard, learning about how different foods and exercises can help him stay well.

Meet Aiden H., St. Petersburg, FL

Aiden was born with a disorder that necessitated a liver transplant when he was just 8 months old. In the first year with his new liver, he had nine rejection episodes. At age 3, one of the drugs he took to control rejection caused him to develop severe food allergies that resulted in anaphylactic shock more than 20 times. Such a complex medical history requires many pediatric specialists collaborating together to coordinate a course of care. That’s why Aiden’s family counts on All Children’s Hospital to work with experts at Cincinnati Children’s Hospital Medical Center, as well as physicians in Atlanta and Toledo.

Meet Riley W., Alexandria, VA

Riley is a fun-loving boy who enjoys socializing with everyone he comes in contact with. Diagnosed with Klippel-Trenaunay-Weber syndrome at birth, Riley’s lymphoproliferative lesions obstruct his airway, requiring a tracheostomy and causing a speech delay. Additional lesions contribute to his delayed motor development, so Riley was transferred as an infant from Children’s National Medical Center to The HSC Pediatric Center. He currently resides in the developmental unit and is known as the official “Ambassador” of The HSC Pediatric Center. Riley enjoys reading, participating in pet therapy and playing with his ball.

Meet Jonathan V., Miami Lakes, FL

At the age of 2 weeks, Jonathan was diagnosed with a brain tumor. Weighing only 13 pounds, the infant endured a seven hour operation at Miami Children’s Hospital to remove it. His prognosis was uncertain at the time, as doctors could not assure his parents of a full recovery. But Jonathan has exceeded everyone’s expectations. Today he is a great student at Bob Graham Educational Center in Miami Lakes where his favorite subject is math. He enjoys camping, playing baseball with his dad and friends, and attending his pre-teen church group. He would like to be a police officer when he grows up.

Meet Jennifer M., Suffern, NY

Jennifer is a bubbly and affectionate 12-year-old who likes to swim, travel and spend time

with her family. At 2 weeks of age, she was diagnosed with dilated cardiomyopathy and underwent two separate heart transplants at NewYork-Presbyterian Morgan Stanley Children’s Hospital. After the first transplant, she battled post transplant lymphoma disease, a form of cancer that successfully responded to radiation treatment. In 2007, she was diagnosed with coronary artery disease and was placed on an ECMO machine for 3 weeks until her heart was able to function on its own. Thanks to the team at NewYork-Presbyterian, today Jennifer attends school, participates in modified gym and can walk up to a half mile. When she is not busy playing with friends and siblings, she is working on getting her bronze award for Girl Scouts.