May
29
Posted by Champion for Children's Health
Eleanor is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Eleanor will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Eleanor loves the color blue in every shade. She is an energetic girl, beaming with personality. Her favorite phrase is "BEST DAY EVER!"
Eleanor was diagnosed with multiple congenital heart defects at birth. With her survival at stake, she was on full life support right after she was born. The doctors at Norton Children’s Hospital informed her parents that a heart transplant was the only option, and 10 days later Eleanor was added to the national waiting list.
May
28
Posted by Champion for Children's Health
Geno is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Geno will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.
Geno was diagnosed at his 21-week ultrasound with complete heart block and hydrops fetalis. His family immediately rushed to the Pediatric Cardiology Department at Cleveland Clinic Children’s to increase his odds of survival.
His parents understood that Geno only had a 5-10% chance of survival, but this heart warrior fought against those odds! Geno was born at 29 weeks and discharged five months later. He went home with supplemental oxygen and a nasogastric tube for food and medicine, but this young fighter made it home. Even though Geno faced many challenges as a premature baby, they did not define or limit his potential in any way.
May
26
Posted by Champion for Children's Health
Lorenzo is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Lorenzo will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.
When Heather was pregnant with her third son, Lorenzo, she had a routine prenatal anatomy scan. The test showed that something was wrong—blood was flowing in the wrong direction through Lorenzo’s little heart.
Before Lorenzo was born, he was diagnosed with severe aortic stenosis, aortic valve regurgitation, mitral valve regurgitation, and evolving hypoplastic left heart syndrome (HLHS). His condition was so severe that it was unlikely he could survive the pregnancy without an intervention.
May
25
Posted by Champion for Children's Health
Maddox is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Maddox will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.
Maddox is extremely loving and outgoing! He smiles all the time and loves meeting new people. Even though Maddox has been through so much in just three years of life, this joyful little boy managed to bounce back quickly and happily.
At birth, Maddox was diagnosed with Down syndrome and an atrioventricular canal defect—his heart had several holes and only one valve. Unfortunately, the hospital in Maddox's home state, Maine, doesn’t have any pediatric cardiac surgeons. His family acted quickly and called Boston Children’s Hospital to get the best care for Maddox. A few days later, Maddox was flown by air ambulance to Boston and transferred to the cardiac intensive care unit. At only 7-weeks-old and weighing barely five pounds, Maddox had open-heart surgery. Thankfully, he has been thriving ever since.
May
24
Posted by Champion for Children's Health
Nick is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Nick will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.
From a young age, Nick has been obsessed with Legos. He even had the chance to visit Legoland in Denmark with Make-A-Wish Foundation!
Nick was born with craniosynostosis, a brain disorder where the bones of his skull closed prematurely. Nick had his first surgery with Dr. Canady from University of Iowa Stead Family Children’s Hospital at six months old to separate the cranium bones and reconstruct his orbital bones, eye sockets and forehead.
May
23
Posted by Champion for Children's Health
Austin is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Austin will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.
To describe Austin in word, you would have to say “courageous”. This 12-year-old is currently in middle school and refuses to let anything slow him down.
Austin was diagnosed with limb-girdle muscular dystrophy, a serious, rare and debilitating form of the disease. Unfortunately, Austin’s condition is progressive—it causes muscle wasting, which has led to increases in falls, the use of a wheelchair and his inability to walk upstairs.
Through frequent physical and occupational therapy care at Children's Hospital of Richmond at VCU, his family hopes to maintain his current level of mobility and function for as long as possible. Without his children’s hospital, Austin would not have access to the specialized care he needs. He currently depends on a whole team of pediatric specialists, including neurologists, cardiologists, orthopedists and more.
May
22
Posted by Champion for Children's Health
Kenny is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Kenny will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.
Kenny is a fighter! He is a sweet 5-year-old who loves super heroes, riding his scooter and petting his bulldog, Buster.
Kenny was diagnosed in utero with multiple complex congenital heart defects and had three heart surgeries before his first birthday. Since then, this brave little boy has fought through every session of physical, occupational, speech, nutritional and developmental therapy. He tried very hard to learn to walk and talk, but the toughest part was learning to eat—he had developed a severe oral aversion and could not eat solid food.
May
21
Posted by Champion for Children's Health
Aria is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Aria will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Aria is an artist who enjoys playing the piano and French horn.
Now 16 years old, Aria was diagnosed with appendicitis at age 10. Nationwide Children’s Hospital gave her the opportunity to participate in an appendicitis antibiotic study. Aria was able to use the antibiotics to improve her condition and avoid surgery. Solving problems without operations can mean a lot for kids—for this young performer, it meant she got to keep her leading part in a holiday play. Aria even went to Disney World for a family vacation a few weeks later!
May
20
Posted by Champion for Children's Health
Elijah is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Elijah will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.
“Don’t assume things about people with cerebral palsy… ask instead! We’re all different and unique and we want to share our story," Elijah shares.
Elijah has endured multiple surgeries and countless hours of physical and occupational therapy to treat cerebral palsy at Gillette Children’s Specialty Healthcare. With hard work and perseverance, he overcame the obstacles that came his way during recovery. These surgeries helped correct the shape of his bones to allow him to stand straighter and taller, and to use less energy when walking. Each of these surgeries posed their own obstacles, but without them Elijah wouldn’t be the person that he is today.
May
19
Posted by Champion for Children's Health
Madison and Aiden are participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, the twins will share information about their health journey and the importance of children’s health care with members of Congress. Below is their story.
These “miracle twins,” now 6 years old, have been through more in their short lives than any child should. But, if you had a chance to meet Madison and Aiden, you would barely notice anything different about them!
Madison and Aiden were born eight weeks premature, both with critical congenital heart defects. Between the two of them, they have had three open-heart surgeries, seven cardiac catheterizations, one eye surgery, six hospitalizations for illness, and many, many diagnostic tests.
The first year was tough for their family—Madison would cry constantly. Madison had Tetralogy of Fallot with pulmonary atresia and multiple major aortopulmonary collaterals. She had her first cardiac catheterization within 24 hours of being born. But after Madison’s first open-heart surgery at the Children’s Hospital of Philadelphia, she would cry less and less, eventually turning into the happy kid she is today!