Children's Hospitals Family Advocacy Day 2009

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.

Brooklyn A., Glasgow, KY

Looking at Brooklyn today, you’d never guess that her infant and toddler days were spent undergoing complicated surgeries to help her live a full life with a heart defect. Brooklyn was born with a single ventricle heart defect that doctors diagnosed before birth. She had a pacemaker implanted when she was a newborn and at six months old she underwent the first of two planned open heart surgeries at Kosair Children’s Hospital to address her defect. Her first surgery was met with complications and less than two weeks later she underwent another unplanned open heart procedure. Six months later the arteries to her lungs were reconstructed and when she was two-years old she underwent a Fontan operation to permanently correct her single ventricle defect. Today Brooklyn likes to ride her bike, play baseball in the backyard and watch cartoons. Those around her know what a fighter she’s been since the day she was born.

Josh B., Canal Fulton, OH

Josh was born with phenylketonuria (PKU), which means he is unable to break down proteins. If left untreated, the amino acid phenylalanine (Phe) would build up in his body, causing severe, irreversible brain damage. Because his condition was identified at birth through newborn screening, Josh’s parents knew to put him on a special diet. Meats, dairy products, nuts and other proteins were off limits. As Josh got older, it became even more difficult to satisfy his hunger. In 2007, Akron Children’s Hospital enrolled Josh in a clinical trial for a new drug called Kuvan, which lowers the Phe levels in the body. He responded so well to the treatment that he was able, for the first time, to eat steak, hamburgers, chicken, pizza and other long-forbidden foods. According to Josh, Kuvan has also improved his cognitive function. He is more energetic, is more attentive in school, and overall, feels better than ever. 

Madeline F., Memphis, TN

When Madeline was 10 months old, the doctors at Le Bonheur Children’s discovered she suffered from four congenital heart defects. Shortly after diagnosis, she underwent open heart surgery to repair a large hole in her heart. In the ICU, as doctors gathered around her bed, she lifted her tiny hand attached with IVs and tubes to wave to them.  That same strong spirit shines everyday! Later, Madeline developed a feeding disorder that was also treated at Le Bonheur through the placement of a feeding tube and feeding therapy. Madeline’s feeding tube was removed and she now eats like a typical four year old. She is currently being treated with medication for her heart conditions. Madeline enjoys swimming, creating art projects, singing, learning ballet and playing with her baby brother. Because of the unique, specialized care given by the staff at Le Bonheur, Madeline enjoys an active life.

Page S., Lakewood, OH

Page is an active seven year old who enjoys reading books, karate and coloring for her parents. She was diagnosed with acute lymphoblastic leukemia (ALL) at age three, and her treatment involved two and a half years of difficult chemotherapy. Her condition also required many admissions to Rainbow Babies & Children’s Hospital, where Page and her family were cared for by a team of dedicated physicians. She still receives follow up care and has blood work performed regularly – a process she will maintain for the rest of her life. Today, Page is happy, funny, and compassionate and is cancer free.

John S., Lakewood, OH

John is a six year old with a great sense of humor, who is bursting with energy!  He loves karate, building with Legos and playing Star Wars. At seven months old, John was diagnosed with a dermoid cyst that spanned from the bridge of his nose to the lining of his brain. Within two months of the diagnosis, John came to Rainbow Babies & Children’s Hospital to undergo surgery—a bifrontal craniotomy—performed by a leading pediatric neurosurgeon. The cyst was removed successfully and only minimal follow up care was needed. Today, John is a very happy and healthy boy who recently completed kindergarten. 

Vincent B., Washington, DC

Born prematurely, Vincent weighed just 3lbs 7oz. at birth. At nine months old he was diagnosed with cerebral palsy. While it effects his motor skills, it doesn’t stop him from having fun and interacting with other kids. Following several surgeries he has gained the ability to walk with the help of a walker and physical therapy at HSC Pediatric Center. Vincent is in the 2nd grade at Miner Elementary school where he has a dedicated aide that works with him to help with his special needs.

Melissa E., New Brunswick, NJ

Melissa enjoys hanging out with her friends, spending time online, shopping and listening to music, especially the Jonas Brothers; typical pastimes for a 15 year old. But Melissa’s life has been anything but typical since she was hit by a car as a toddler, causing a traumatic brain injury. While initially her prognosis was grim — less than 10 percent chance of survival — Melissa beat those odds and is thriving today, thanks in large part to the team at Children’s Specialized Hospital who worked with her on an intense rehabilitation program. Signs of her accident remain — she walks with a limp and has a weak right arm — but her focus is on the future and her goal of attending college to be a teacher. 

Follow Melissa's journey to Washington, D.C.