Children's Hospitals Family Advocacy Day 2008

Peter Dankelson, Highland, MI

2008-07-03T14:00:00-04:00

When 7-year-old Peter’s ear fell off in class, his fellow first graders were surprised. But for Peter, it was just a typical day. Diagnosed with Goldenhar Spectrum, a disorder that causes abnormal development of the head and face, he was born at 30 weeks without his left ear and ear canal, and with an underdeveloped lower jaw, a cleft palate, a right single pelvic kidney and several other serious health conditions.

Peter is able to have some fun with his prosthetic ear by tricking his doctors at Children’s Hospital of Michigan into examining it. More than eight specialists at the hospital have worked together to perform his many reconstructive surgeries and provide follow-up care and therapy, including therapy that is helping him transition from a feeding tube to oral eating. Whether Peter is cheering on the Detroit Red Wings or running and playing at school, he’s teaching everyone around him not to be afraid to make friends with someone who looks different.

Listen to Peter and Dee Dee share how Medicaid played a vital role in their lives.

Leave a comment to cheer on Peter as he travels to Washington, DC to champion children's health issues.

Michael Matuszak, Menomonee Falls, WI

2008-06-13T11:29:08-04:00

At 6 weeks old, Michael was tested for cystic fibrosis at the Children’s Hospital of Wisconsin because his older sister had the genetic disease. The test confirmed that he too would face the health challenges caused by the disease, which affects the mucus lining of the lungs.

For the past 18 years, the hospital’s specialists have stayed on top of Michael’s condition with regular three-month checkups that track his lung factions, weight and height. Although Michael has had to undergo three sinus surgeries and must do airway clearance with a nebulizer three times a day, the expert care he’s receiving allows him to keep up with his many hobbies, including listening to music, studying foreign languages and watching baseball.

Leave a comment to cheer on Michael as he travels to Washington, DC to champion children's health issues.

Samantha “Sam” McCarthy, Columbus, OH

2008-06-13T11:27:25-04:00

When Samantha’s parents took her to the doctor three years ago for what they thought was a nagging virus, they were stunned to learn she has Fanconi anemia, a rare blood disorder that leads to bone marrow failure. The first good news the family received after this life-changing diagnosis was that Cincinnati Children’s Hospital Medical Center has the Fanconi Anemia Comprehensive Care Center, where doctors and nurses are now providing Samantha the specialized services she needs.

If a bone marrow transplant becomes necessary, the family says they will turn to the hospital for the outstanding care they’ve grown used to. In the meantime, this vibrant, intelligent fourth-grader is participating in Girls Scouts, playing tennis, swimming and reading biographies of important people, including Thomas Jefferson and Thomas Edison. Thanks to Cincinnati Children’s, Samantha will have the opportunity to make her own mark on history.

Leave a comment to cheer on Sam as she travels to Washington, DC to champion children's health issues.

Tenley Wolff, Houston, TX

2008-06-09T16:56:43-04:00

When 3-year-old Tenley smiles at you, you can’t help but smile back. And thanks to Texas Children’s Hospital, she has a smile on her face almost all of the time.

Born early at 31 weeks along with her twin brother, she was diagnosed with a fatal heart condition that could only be repaired with open heart surgery. For five months, a team of pediatric specialists at Texas Children’s provided the advanced technology and skill Tenley needed to grow into the dancer and music lover she is today. She passes on the caring of the doctors and nurses at the hospital by sharing her beautiful smile with everyone she meets.

Leave a comment to cheer on Tenley as she travels to Washington, DC to champion children's health issues.

Alberto Rodriguez, Modesto, CA

2008-06-09T16:54:35-04:00

The Lucile Packard Children’s Hospital Pediatric Liver Transplant Program has one of the highest success rates in the nation. One of its success stories is 11-year-old Alberto, who had his first liver transplant when he was just an infant. The transplant lasted three years before a second transplant was needed.

Alberto is doing well with his new liver, eager to dribble down the soccer field while his mom, dad and two sisters cheer him on. But the family is always willing to take a “time out” to support the hospital, where dad is a member of the Family Advisory Council.

Leave a comment to cheer on Alberto as he travels to Washington, DC to champion children's health issues.

Sam Delongchamps, Mt. Pleasant, SC

2008-06-09T16:52:27-04:00

On Oct. 3, 2005, parents Caroline and Dean watched their worst nightmare unfold. Eleven-month-old Sam was crawling on their driveway when he was suddenly hit by a car. An ambulance took Sam to The Children's Hospital Medical University of South Carolina (MUSC) where, for 24 hours, he teetered between life and death. Doctors stabilized him and moved him to the pediatric intensive care unit. With an uncountable number of broken bones in his head and face, Sam needed major reconstructive surgery.

The hospital’s intensivists, pediatricians, anesthesiologists, plastic surgeons, ophthalmologists and neurosurgeons worked together to heal Sam. Three weeks after the accident, he was on his way home. Now 3 years old, Sam is happy and healthy thanks to the incredible dedication and skill of the MUSC team.

Leave a comment to cheer on Sam as he travels to Washington, DC to champion children's health issues.

Abby Provinzino, Woodbury, MN

2008-06-08T15:47:34-04:00

Minutes after her birth, Abby was diagnosed with bilateral choanal atresia, an obstruction that blocked both sides of her nasal airway. Because babies have to use their noses to breathe, the condition was life-threatening. A series of highly specialized surgeries at Children’s Hospitals and Clinics of Minnesota opened Abby’s airway, which is now growing normally.

Now this nature-loving first grader can breathe easy as she spends time camping in the woods with her parents and her younger brother.

Leave a comment to cheer on Abby as she travels to Washington, DC to champion children's health issues.

Leah Smith, Fort Wayne, IN

2008-06-08T15:37:49-04:00

Seventeen years ago, parents Joan and Creager waited anxiously for their 11-day-old daughter, Leah, to come out of heart transplant surgery at Riley Hospital for Children. Born with hypoplastic left heart syndrome, the transplant was Leah’s only chance for survival.

Today, the energetic high school senior is educating the public on the importance of organ donation and transplantation as a volunteer for an Indiana procurement organization. She honors her heart donor by staying healthy as a competitive figure skater and ballroom dancer. Between her visits to Riley Hospital every six weeks for follow-up care, you can catch Leah on the air as a volunteer disk jockey for an internet radio station focused on positive messaging.

Leave a comment to cheer on Leah as she travels to Washington, DC to champion children's health issues.

Isabella “Bella” Rose Valeo, Toms River, NJ

2008-06-08T15:37:04-04:00

When Bella was 6-weeks-old and in the NICU, her family first heard the term “Prader Willi Syndrome.” The genetic disease resulted in an eating disorder and a host of other serious physical and cognitive challenges. To give Bella the best opportunity to succeed, her parents turned to Children’s Specialized Hospital. Not only did Bella get the medical care she needed, staff gave her family something just as important — hope.

“When others said ‘we’re sorry,’ Children’s Specialized worked with Bella to roll, crawl, stand, walk, hold a fork, use a crayon, put on her clothes, chew her food and speak,” says her mother. Today, Bella continues to have success, playing babies with her sisters and holding onto the swing as her daddy pushes her. For this amazing girl, the sky’s the limit.

Leave a comment to cheer on Bella as she travels to Washington, DC to champion children's health issues.

Taylor Joy Buckles, Stafford, VA

2008-06-08T15:36:09-04:00

Taylor was diagnosed with a benign tumor on her spinal cord when she was 3 years old. The tumor was causing her spinal cord to be tethered; without surgery she would be paralyzed from her waist down. Her parents turned to an “amazing” pediatric neurosurgeon at Children’s National Medical Center to remove the tumor and detether her cord.

Although Taylor lost some function in her right leg as well as in her bowel and bladder, her can-do-anything attitude keeps her busy splashing in the pool and playing outside with her twin sisters, Erin and Jade. Although her cord could continue to become retethered until she is done growing, Taylor’s positive attitude remains an inspiration to everyone around her.

Leave a comment to cheer on Taylor as she travels to Washington, DC to champion children's health issues.