Children's Hospitals Family Advocacy Day 2009

Zoe R., St. Petersburg, FL

Zoe is a spunky little girl who doesn’t give up. For most of her life Zoe has been battling a severe case of asthma. Over the years Zoe has become very familiar with All Children’s Hospital. She had surgery to remove her adenoids, two sinus surgeries, hernia repair surgery (a result of chronic coughing), multiple bronchoscopes and many sinus cultures. She has also had many hospital stays so that she can receive oxygen in order to prevent her blood oxygen level from falling dangerously low causing brain damage or respiratory failure. She understands that staying in the hospital is just part of her life. She is what the doctors think of as a “medical mystery,” despite all the best treatment her asthma continues to be a challenge. There are no easy answers for Zoe’s condition but she keeps fighting, and All Children’s Hospital doctors and nurses are by her side all the way.

Alexandra R., St. Petersburg, FL

Alexandra is an inspiration to everyone in her family and a true role model of positivity in the face of adversity. As a baby and toddler Alexandra experienced multiple respiratory infections, bronchiolitis and pneumonia. Eventually diagnosed with asthma, Alexandra was put on a medication regiment that began to improve her breathing problems. She was referred to an ear, nose and throat specialist at All Children’s Hospital who discovered she had sinus cavities that were blocked by an abnormal bone growth. She underwent a series of surgeries to remove the growth, as well as, sinus polyps and adenoids. The results were dramatic and she became a different child. She was no longer cranky from not being able to sleep, she was able to get over colds without having severe asthma flare-ups, and in short she began to enjoy life. In order to support other children with asthma, Alexandra started her own fundraising initiative called “Tri 4 Asthma” where she gets people to sponsor her for every mile she completes in children’s triathlons.

Brian P., Miami, FL

Thirteen-year-old Brian likes to talk on the phone, go to the movies and ride his bike. He has a twin brother and an older sister, Monique. Like his sister, Brian was diagnosed with sickle-cell disease at birth. While he says dealing with his sickness causes him to miss out on a lot of activities, he is very thankful for the care he has received from Miami Children’s Hospital.

Monique P., Miami, FL

Monique was diagnosed with sickle-cell disease at birth. She was born in London and moved with her family to the U.S. when she was 4 years old. While she says her life has been hard due to her illness, she credits Miami Children’s Hospital for making things a lot easier. Monique enjoys hanging out with her friends, modeling and listening to music.

Sebastien S., Warren, ME

Sebastien is an energetic 3 year old who was born with a complete bilateral cleft lip and palate. Sebastien’s parents learned that he would have a cleft lip and palate when his mom was 18 weeks pregnant. Due to the severity of his cleft, he was sent to Children’s Hospital Boston to have it repaired. Throughout the three surgeries that he has undergone, Sebastien has never stopped being his adorable self. Sebastien loves to drive his John Deere Gator around outside his house while chasing his two dogs. He also loves to play with his cars and trucks. One of his favorite pastimes is playing racing games on the Wii.

Leo J., West Chester, OH

Leo loved the outdoors, bird watching, camping, fishing and hunting. He was a wonderful son, caring big brother and steadfast friend. Diagnosed with acute myelogenous leukemia (AML) in March 2004 at age 11, he spent two years fighting his disease. He successfully achieved remission after chemotherapy but relapsed after four months. Additional chemotherapy and a bone marrow transplant did not achieve another remission but did enable him to live another awesome year, where he was able to spend time at home and in the outdoors doing the things he loved. Over those two years, he was inpatient at Cincinnati Children’s Hospital Medical Center for over 220 days. His brother and sister enjoyed visiting him at the hospital and cherished the time with Leo when he was at home between treatments. Leo died at home under the care of StarShine Pediatric Hospice on March 13, 2006. We love him and always remember his courage, strength, humor, grace and hope in all circumstances.

Nicklas N., Rosemont, MN

In many ways, 10-year-old Nick is like any other young boy. But Nick is also wise beyond his years. That’s because he’s had to make a very tough decision — not once, but twice. Nick was born with popliteal pterygium syndrome, an extremely rare condition that prevented him from walking the way most kids do. Though surgeries helped, Nick still had pain and relied on a wheelchair much of the time. He made a difficult decision last year to have doctors amputate his deformed right leg. Although the amputation improved Nick’s mobility, his remaining leg worsened, causing him significant pain. On his physician’s recommendation, Nick decided to have his left leg replaced with a prosthesis. Despite his challenges, Nick maintains a positive outlook and a contagious sense of humor. He once told his mom Greta that his biggest challenge “is probably getting motivated to finish my math homework.”

Abbigail P., Indian Mound, TN

Abbigail is a happy and energetic 4-year-old who enjoys reading books, singing, coloring, painting and dressing up her dog. Her favorite thing to do is to go outside and play. She is an incredibly cheerful little girl who has brought so much joy to her family’s life and everyone who meets her. Abbigail and her parents have been a part of the Monroe Carell Jr. Children’s Hospital at Vanderbilt family since her birth in 2005. She was born 10 weeks premature and spent nearly three months in the neonatal intensive care unit. She was born with a small hole in her heart. Cardiologists watched it carefully until it closed on its own by the time she turned 2 years old. Abbigail sees an endocrinologist four times a year to treat and monitor her hypothyroidism, and comes to the hospital’s Down Syndrome Clinic for annual evaluations.  Follow Abbigail as she prepares for her trip to DC on her hospital's blog.

Bobbi E., Pittsburgh, PA

Bobbi is an active 11-year-old. She lists her favorite activities as cheerleading, gymnastics, singing, dancing and playing the guitar. She also loves bike riding, playing basketball and long walks in the park. However, her ability to participate in any of these activities depends on whether or not she is having a pain crisis. Bobbi has sickle-cell disease and significant pain is a side effect she must deal with at times. With the support of her family and friends, the medical expertise of her physicians, and her positive attitude, Bobbi lives a full and active life. Bobbi is representing Children's National Medical Center at Family Advocacy Day.

Rachael T., Coventry, CT

Rachael was 9 years old when she went to the doctor thinking she might have asthma. Her doctor knew something was wrong with her lungs and sent her family to Connecticut Children's Medical Center. Exams and scans revealed Rachael had lymphoblastic lymphoma. Rachael's focus from the moment she found out that she had cancer was to be well and to do everything her sisters and friends were doing. Losing her long, blond, curly hair was tough, but she never wore the wig her parents bought her. Rachael was a full-time student in the fifth and sixth grades while going to the hospital for treatments for two years. She felt well enough to enjoy horseback riding and join a water ski team during her treatment last summer. May 1, 2009 was her last day of treatment. She and her family look forward to her cancer-free future.

Isabella C., Essex, VT

In just five short years Bella, who was diagnosed with Down syndrome at birth, has experienced 11 surgeries, including heart surgery at 2½ months of age at Children’s Hospital Boston. Yet, according to her parents, she is the “essence of our good fortune.” Described as brave, feisty, funny and sweet, Bella loves school and has many friends. She loves to read, ride horses, paint, swim, sing, dance and explore nature.

Alec F., Chicago, IL

Alec is a high-energy 8-year-old who loves sports, music, art and traveling to fun places. A prenatal ultrasound revealed that Alec’s kidneys were not growing properly. Both kidneys were too small and there was concern that he may have a condition called hydronephrosis, where urine collects in the kidney. The condition can be quite dangerous and cause a variety of health problems. Even before Alec came into the world, Children’s Memorial was able to assist him. A pediatric urologist reviewed images of Alec’s kidney to determine the best course of treatment after his birth. Children’s Memorial urologists monitored Alec’s kidney function until he was 5 years old. Thanks to Children’s Memorial Hospital his kidneys are functioning beautifully.

Olivia E., Wheeler, MI

Olivia is a joyful first grader. She loves going to school and the zoo. She also enjoys playing games, riding her bike and spending time with all of her family. Olivia was diagnosed with medulloblastoma the day before her fourth birthday. As soon as the tumor was found, she was sent to University of Michigan C.S Mott Children’s Hospital to seek treatment. She was able to defeat her cancer and has been in remission now for three years. Olivia still goes to University of Michigan C.S. Mott Children’s Hospital for follow-up and post therapy treatments where the staff is considered to be part of the Erickson family.

Lionel F., New York, NY

Lionel is a wonderful 11-year-old boy who loves riding his bike, playing video games, reading books, cooking meals and even ballroom dancing. Like most New Yorkers, his favorite team is the New York Yankees. Eleven years ago he was diagnosed with a renal condition, which left untreated could have resulted in death, but Lionel is a fighter. His first treatment regimen included dialysis, a lot for a young boy to undergo. However, Lionel eventually received a new kidney from his older brother. Now, Lionel is enjoying life, excelling in school and making his mother and family very proud. Lionel's mother says without New York-Presbyterian Morgan Stanley Children's Hospital and Medicaid, which allowed Lionel to have access to lifesaving treatment, he would not be here today.

Shayla E., Dayton, OH

Shayla was 11 months old when she was diagnosed with sickle-cell anemia, but 10 years later is staying positive even though she has frequent bouts of pain. Sickle-cell anemia is an inherited condition where the red blood cells, which are normally round and flexible, are sticky, hard and crescent moon shaped. This causes decreased oxygen and blood flow to certain parts of the body, which puts the person in intense pain. Shayla’s 7-year-old sister, Aliya, also suffers from sickle-cell. Both girls are treated at Dayton Children's Medical Center.Today Shayla is in the seventh grade at Wiesenborn Middle School in Huber Heights, OH, where she has skipped a grade and has received numerous academic honors. Outside the classroom, Shayla is active in cheerleading, student council and choir. Her true passion is music. “I love to sing and I love to be the center of attention,” states Shayla.

Aliya E., Dayton, OH

Aliya is an active 7-year-old. She enjoys riding her bike, basketball, playing outside and playing with her dog. Aliya was diagnosed with sickle-cell anemia after her mother was tested during pregnancy and has been a patient of Dayton Children’s Medical Center her entire life. Sickle-cell anemia is a condition where the red blood cells, which are normally round and flexible, are sticky, hard and shaped like crescent moons. This causes decreased oxygen and blood flow to certain parts of the body, which puts the person in intense pain. An inherited disease, Aliya’s older sister Shayla also suffers from the sickle-cell anemia.

Blake W., New Port Richey, FL

Blake is a 5-year-old boy who has experienced a lot more in life than most other children his age. He is outgoing and has a talent for playing the drums. He also enjoys playing baseball and loves to read books. Blake was diagnosed with hypoplastic left heart syndrome (HLHS) at birth and experienced his first open heart surgery at St. Joseph’s Children’s Hospital, one of the few institutions in Florida capable of repairing his congenital heart defect. Since that fateful day, Blake has experienced two other open heart surgeries and countless trips to the doctor and hospital all before the age of 3. Now he is thriving and experiencing the same challenges and opportunities of any young child. The road ahead may have a few bumps, but because of the care and medical attention Blake has received, his future and life path will be long and prosperous.

Kaitlyn B., Chantilly, VA

Kaitlyn is an enthusiastic and energetic 3-year-old who loves ballet class, dressing up, singing and reading books. Kaitlyn was diagnosed with a cleft lip at birth and with a left pulmonary artery sling at 6 months of age. Both were repaired at Children’s National Medical Center. However, the sling repair caused a weakness in her trachea, and also resulted in a diagnosis of tracheomalacia and bronchomalacia, resulting in intubation. After a month of unsuccessful extubation attempts, Kaitlyn underwent a tracheostomy and she required ventilator support at night. She spent four months at The HSC Pediatric Center where she received physical, speech and occupational therapies until she was determined fit enough to go home. After three years, Kaitlyn was weaned off the ventilator and her tracheomalacia resolved. She is in the process of preparing for removal of the tracheostomy tube. Kaitlyn can’t wait to start swimming and traveling, especially to Japan.

Annika, Maya & Vann A.

 

Siblings Annika, Maya and Vann are all patients at Children’s Hospital of Philadelphia.

Annika and Maya are six year old twins who have a rare undiagnosed genetic syndrome which is manifested in many medical and developmental issues including scoliosis, low muscle tone, serious reflux, heart issues, skull-growth abnormalities and global delays. Both girls have undergone many complex surgeries, with more anticipated in the future. Despite her complex medical condition, Annika is a happy child who loves to interact with others. She enjoys music, bouncing balls, playing with her brother, swimming and more. Her sister Maya is described by family as a curious child who loves to learn and keep busy. Maya enjoys coloring, looking at books, going to school and playing outdoors with her dad.

Older brother Vann is an energetic nine year old who loves ice hockey, bowling, riding roller coasters, playing with his dad, the computer, and travelling with his mom. At his four year old annual check-up, he was observed to have unusually high blood pressure. His physician recommended that he see a nephrologist at Children’s Hospital of Philadelphia, who diagnosed Vann as having renal and aortic stenosis, which is hardly ever seen in children. Vann underwent renal angioplasty, a rarely performed procedure in children which has temporarily reduced his blood pressure. He is closely monitored by his nephrologist for any changes in kidney function due to the continuing stenosis.

Dequan W., Clinton, MD

Dequan is a happy, 9 year old boy who loves watching and playing sports and making people laugh. Diagnosed with cerebral palsy/spastic diplegia at seven months old, Dequan had two rehabilitative stays at The HSC Pediatric Center following surgeries in 2003 and earlier this year.  At the present, he is still recovering and receiving extensive physical therapy. Dequan looks forward to the day when he can travel to the beach and play sports with his twin brother Nishon.