2011 Family Advocacy Day All-stars

Meet Evan C., Dover, OH

Evan first experienced dizziness and fatigue following basketball practice in November 2007. His family took him to Akron Children’s Hospital where he was diagnosed with ventricular tachycardia, a ventricular rhythm anomaly. His doctors advised Evan to temporarily give up sports, but the sacrifice didn’t improve his condition. In February 2008 Evan suffered cardiac arrest and was life-flighted to Akron Children’s where doctors performed surgery to insert an automated implantable cardiovertor-defibrillator (AICD) in Evan’s chest. An AICD monitors the heart rhythm and if the child goes into ventricular tachycardia or fibrillation, it delivers an electrical shock to restore normal rhythm. Evan, now 19, is a pre-med major at Wittenberg University, where he is very involved in campus ministries and community service. 

Meet Christopher S., Orange Park, FL

Christopher is a happy 9-year-old who enjoys sports, playing video games and drawing. Born with osteogenisis imperfecta, Christopher’s legs were already fracturing in utero. At 6 months old, a broken arm brought him to Wolfson Children’s Hospital where he underwent a series of surgeries that helped significantly minimize fracturing. By the time he was 3 years old, Christopher was walking. A year later, he began pamidronate infusions to further minimize fractures—a therapy that continues to improve his quality of life. He still suffers from fractures, but between the injuries and surgeries, Christopher lives a normal life. Full of strength and determination, he has the ability to bring a smile to the faces around him and maintains a cheerful, positive outlook.

Meet Tessa F., South Lyon, MI

Tessa is a creative, energetic and talented teen who has cystic fibrosis. Diagnosed at 9 months old, she receives therapy and medication every day to stay healthy. The pulmonary specialists at Children’s Hospital of Michigan understand the progression of her disease and have been instrumental in maintaining her health and lung capacity so Tessa can maintain her busy schedule. Despite occasional hospitalizations and lung infections, Tessa doesn’t let the disease slow her down. She is a green belt in karate, plays the piano and clarinet, and is teaching herself to play the violin. She raises sheep for wool and rabbits for angora. Intensely curious about different cultures across the globe, Tessa is a great student who plans to study medicine some day. Her dream is to travel with Doctors Without Borders to provide care for those in need.

Meet Meadow R., Providence Village, TX

Meadow Rhynes was just 6 years old when she was badly hurt in a car wreck while traveling home from a holiday visit with her grandparents. The collision caused Meadow’s seat belt to cut into her abdomen, damaging her spine and brain. Doctors near the wreck site knew they had to get Meadow to Children’s Medical Center in Dallas, the only Level I trauma Center in North Texas. Meadow endured several operations to repair internal injuries and reattach her skull to her spinal cord. No one knew whether she’d walk again, or even survive. But her nightmare turned into a Christmas miracle. She not only survived, but was back in school by May, wearing glasses to correct most of the vision impairments caused by the brain injury. Just a year after her accident, Meadow and her sister served as grand marshals in the Children’s Medical Center Holiday Parade.

Meet Morgen R., Providence Village, TX

Morgen Rhynes had a wonderful time visiting her grandparents on Christmas Eve in 2009, until her family suffered a terrible car accident on the way home. The collision caused internal injuries and broke Morgen’s arm. She and her sister were hurt so badly that doctors said only a Level I trauma center could care for them. So Morgen ended up at Children’s Medical Center in Dallas, the only pediatric hospital with a Level I trauma center in North Texas. At Children’s, many departments worked together to treat the girls—from surgery and radiology to the intensive care unit. It was a long recovery, but Morgen gradually got better and even went back to school five months later. In December 2010, just a year after the accident, Morgen and her sister served as grand marshals in the Children’s Medical Center Holiday Parade.

Meet Connor C., St. Petersburg, FL

Connor is an energetic and adventurous 9-year-old who was born with a cloverleaf skull and an Arnold-Chiari type 1 malformation, a condition that can cause severe neurologic and cognitive defects. He spent the first two months of his life in the NICU at All Children’s Hospital, where his expert care included having a tracheostomy tube placed, receiving a shunt and having the first of several craniotomies to expand his skull. Later he was also diagnosed with Crouzen syndrome and cerebral palsy. He has endured 30 surgeries—most of them at All Children’s Hospital—where he continues his regimen of physical and speech therapy. Connor just completed second grade at Shore Acres Elementary where he is fully included in a regular classroom. He also loves being a Cub Scout with Pack 280.

 

Meet Bailey A., Carlisle, OH

Bailey is a bright, spunky 11-year-old who is energetic, loving and caring. When Bailey was 6 weeks old, her mother found a lump on the bottom of her right foot. A biopsy revealed that Bailey’s tumor was congenital fibrosarcoma. While other doctor’s wanted to amputate, the orthopedic surgeon at The Children’s Medical Center of Dayton was able to remove the entire tumor after its size was reduced by chemotherapy. Bailey endured nine months of aggressive chemotherapy, before the 18-month-old was deemed cancer-free! Today, Bailey is active in soccer, softball, dance and basketball. Watching her you would never know she was once a cancer patient who could have lost her right foot. She volunteers time every week at her grandma’s nursing home and has donated her hair to Locks of Love.

Meet Ally G., Mahtomedi, MN

Ally was a healthy, active 10-year-old girl prior to a rapid and mysterious decline that left her unable to get out of bed or lift her head off the pillow. In 2008, she was diagnosed with dermatomyositis, a rare and life-threatening auto-immune disease that affects one in a million children. Ally spent seven weeks as an inpatient at Children’s Hospitals & Clinics of Minnesota, undergoing intensive therapies—including pet therapy, which proved to be most effective. Today, Ally continues treatment but enjoys swimming, reading, drawing and spending time with her dog, Angel, an official pet therapy dog. She is a member of the Children’s Youth Advisory Council where she uses her experience to help make a difference in the lives of others. She hopes to someday become an occupational therapist and help out with the pet therapy program.

Meet Shane C., Memphis, TN

Shane was a perfectly healthy baby boy until the day he began having violent convulsions at just 4 months old. The convulsions rapidly increased in frequency and intensity until Shane—unable to breathe properly—lost consciousness. After several misdiagnoses and many invasive tests, he was admitted to Le Bonheur Children’s Hospital’s Neuroscience Institute where the doctors immediately diagnosed him with infantile spasms, a rare form of epilepsy. Within hours of his diagnosis, Shane was placed on drug therapy and his spasms calmed. A year later, Shane suffered complications from a routine surgical procedure at another medical facility and was airlifted back to the hospital’s pediatric intensive care unit. Le Bonheur saved and maintained the quality of Shane’s life not once, but twice. Shane is now a happy, healthy 5-year-old who enjoys golf, karate and math.

Meet Franchesca P., Brooklyn, NY

Franchesca is a mature, friendly 14-year-old who stands out with her warm, sweet smile, beautiful long hair and fashionable, trendy outfits. She lives in Brooklyn, NY with her mom, and in close proximity to many aunts, uncles and cousins. When she was 2 years old, doctors at Morgan Stanley Children’s Hospital of New York-Presbyterian diagnosed Franchesca with Niemann- Pick disease type B, a progressive disease that impacts her liver, spleen and lungs. At this time there is no known treatment or cure. Franchesca enjoys school, reading mysteries, listening to music and playing on her computer. She is an eighth grader and her favorite subject is social studies, with a focus on history and culture. Franchesca is fluent in Spanish and English, and often helps translate for her mom, who speaks primarily Spanish.