2011 Family Advocacy Day All-stars

Meet Elizabeth C., Crestwood, KY

Elizabeth is a beautiful 18-year-old who appeared to be perfectly healthy when she was first born. On the morning following her birth, however, her health took an unfortunate turn. She was diagnosed with tetralogy of Fallot, a rare and complex heart defect that requires open-heart surgery to correct. At that point, Elizabeth’s long relationship with Kosair Children’s Hospital began. After many years of challenging therapy, Elizabeth has made a remarkable recovery. Although she continues to struggle with the side effects of a stroke following surgery, Elizabeth loves life! Today she enjoys spending time with her beloved dogs and cat, writing short stories, painting, going to school, volunteering at a local animal shelter, serving at Mass and playing cards with her mom.

Meet Brandon W., Pickerington, OH

Brandon is a fun-loving 8-year-old who loves reading, being outdoors and playing with his friends. At just 5 months of age, Brandon was diagnosed with dilated cardiomyopathy, meaning one chamber of his heart was larger than the other three. With the help of the cardiology team at Nationwide Children’s Hospital, Brandon’s parents were able to manage his health with medication and regular checkups. For five years this was his routine, until it became evident that medicine alone could no longer help Brandon. He needed a heart transplant. Brandon received his new heart on June 21, 2009, and has been in good health ever since. Thanks to the “gift of life” and his team of doctors at Nationwide Children’s, Brandon is now able to keep up with his friends, enjoying swim classes and playing video games!

Meet Jonathan B., Milwaukee, WI

Jonathan is a happy 18-year-old who loves hanging out with friends, going to the mall and playing football. In 2009, Jonathan was the victim of an armed robbery and was shot seven times. He was in critical condition when he arrived at Children’s Hospital of Wisconsin. His sister, LaHelen received great care at Children’s for asthma and Lupus, so it was a hospital his family trusted. While doctors worked to save Jonathan’s life, his family began participating in Project Ujima, a program that helps victims of violent crime overcome the trauma they experienced through counseling and case management. Project Ujima taught them how to overcome the tragedy, prevent further victimization and end the cycle of violence. Today, Jonathan is a healthy college student who just finished his freshman year.

Meet Thomas K., Parma, OH

Thomas is a 5-year-old boy who is funny, dramatic and full of energy. At birth, Thomas failed his newborn hearing screening. His family took him to Rainbow Babies & Children’s Hospital where he was diagnosed with profound hearing loss. Doctors fitted Thomas with high-powered hearing aids and started weekly speech therapy. When he was 12 months old, Thomas received his first cochlear implant followed by another surgery for the second cochlear implant ten months later. Every six months he gets processors “fine-tuned” and has a check up with his otolaryngologist, but his hearing is much improved. Although he continues with ongoing speech therapy, Thomas is a very happy, healthy little boy who is getting ready for kindergarten in the fall. He loves basketball, playing with his super heroes and riding his bike.

Meet Kylie H., Goffstown, NH

Kylie is a lively and lovable 16-month-old girl who is irresistibly stubborn and set in her ways. Born with numerous medical complications that left her local doctors puzzled, her parents brought her to Children’s Hospital Boston, where they diagnosed her with CHARGE syndrome and sleep apnea. CHARGE syndrome is an incredibly complex genetic condition that causes difficulties with feeding, walking and communication, and has left Kylie deaf and legally blind. The care she receives from her team of specialists at Children’s makes it possible for her to overcome obstacles and progress in ways that her family, friends and doctors never imagined. Kylie’s favorite activities are spinning, kicking, swimming, jumping and pretty much anything else that involves action.

Meet Reese S., Hemlock, MI

Reese and her twin sister, Ryleigh, were born three months premature weighing only two pounds each. They are survivors of the very rare twin to twin transfusion syndrome (TTTS) and required fetal surgery at only 18 weeks gestation. Reese became very ill after birth and required long-term intubation. As a result, she developed scar tissue in her trachea causing complete blockage of her airway. She was flown to the University of Michigan where they placed a tracheotomy tube to allow her to breath. Reese had several other complications which required her to remain hospitalized until she was 11 months old. At home, she required ventilator assistance until she was 2 and today still has a feeding tube. She has had dozens of operations and procedures, including a stomach surgery, a heart catheterization to open a closed valve and removal of her right middle lung.

In order to be rid of her trach, Reese required reconstruction of her airway, which would enable her to laugh, eat solid foods and take part in activities such as swimming. She was sent to Cincinnati Children's Hospital where Robin Cotton, MD, pioneered an airway reconstruction procedure. Even though the hospital is seven hours from the Sunderlands’ home in Michigan, the family traveled to Cincinnati for Reese’s first airway reconstruction surgery in August 2010. The first airway reconstruction was unsuccessful, and a second attempt was made in May 2011. This time, pieces of Reese's rib cartilage were grafted to reconstruct her trachea. She came out of that surgery without her tracheotomy tube in place, but is intubated to allow for healing of the new airway.

Meet Henry H., Johnson City, TN

Henry is a 5-year-old boy with boundless energy and a love for his family. He never tires of playing with his two sisters and many cousins, and he has yet to meet a stranger. He was diagnosed with Wilms Tumor, a pediatric renal cancer, when he was 7-1/2 months old. His pediatrician found a mass in his abdomen during a routine exam. Henry's kidneys have produced tumors on three separate occasions. As a result, he has undergone several surgeries, three rounds of chemotherapy and radiation. His body now functions with 60 percent of one kidney. He is followed closely by the staff of Niswonger Children’s Hospital to watch for cancer recurrence and to monitor his renal function. Though Henry has known his share of difficult days, he remains unfailingly cheerful and prides himself on being a young gentleman. However, from time to time, he also enjoys being a pirate, a cowboy, a physician, a teacher or a superhero.

Meet Noelle K., Homer Glen, IL

Noelle is an energetic 8-year-old who is full of life. In 2003, she was diagnosed with biliary atresia, a rare condition in newborn infants in which the common bile duct between the liver and the small intestine is blocked or absent.  Noelle received her first liver transplant as an infant in Minnesota, and another in 2006 at Children’s Memorial. Also diagnosed with portal vein thrombosis, Noelle has been receiving treatment from the gastrointestinal clinical team at Children’s for more than five years. She continues her relationship with Children’s Memorial and receives treatment there about every three months. Noelle loves playing with her friends, tap dancing and ballet.

Meet Gabriella M., Las Vegas, NV

Gabriella loves to cook. Some of her favorite recipes include spaghetti and roasted chicken with homemade mashed potatoes and gravy. At the age of 15, she was diagnosed with Churg-Strauss syndrome, an autoimmune disease that attacks the vital organs. When her kidneys started to fail, doctors at Children’s Hospital of Nevada at UMC performed lifesaving plasmapheresis procedures on Gabriella and put her on dialysis. She currently receives dialysis three times a week at Children’s Hospital. Gabriella enjoys playing with her puppy as well as watching “Criminal Minds” on TV and trying to solve the crime before the end of the show. In the future, she wants to either work with children or in the criminal justice field.

Meet Crystal R., Homestead, FL

Crystal loves music, fashion design, photography, baking with her mother and reading good books. While still in utero, a pregnancy sonogram revealed that Crystal had tetralogy of Fallot, a congenital heart defect. Doctors at Miami Children’s Hospital performed two open heart surgeries and two stent procedures. Recently Crystal received a transcatheter pulmonary valve implantation and the procedure was a complete success. Today, Crystal can run, dance and play with her sisters at high speeds—a totally different little girl. Crystal’s family is very grateful for the support and encouragement received from family, church members and the cardiology department at Miami Children’s Hospital.