May 25

Meet Maddox: 2019 Family Advocacy Day Child Champion

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

Meet Nick: 2019 Family Advocacy Champion

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

Meet Austin: 2019 Family Advocacy Day Child Champion

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

Meet Kenny: 2019 Family Advocacy Day Child Champion

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

Meet Aria: 2019 Family Advocacy Day Champion

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

Meet Elijah: 2019 Family Advocacy Day Champion

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

Meet Madison and Aiden: 2019 Family Advocacy Day Champions

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!

May 18

Meet Eden: 2019 Family Advocacy Day Champion

Eden is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Eden will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

When you meet Eden, the first thing you’ll notice is her lovely smile. It is as bright as her spirit is strong!

In June of 2015, when Eden was just 10 years old, she was diagnosed with a rare tumor that had spread throughout her body, including her leg, shoulder and hip cavity. Eden lost the ability to walk for nearly a year as she fought the cancer. Soon after diagnosis, Eden’s treatment plan was drafted by the Rare Tumors and Neuroblastoma programs at Texas Children’s Hospital—this plan included many taxing rounds of chemotherapy and hip surgery. 

May 17

Meet Max and Els: 2019 Family Advocacy Day Champions

Max and Els are participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, the brothers will share information about their health journey and the importance of children’s health care with members of Congress. Below is their story.

Max is a spirited young man who loves to act, golf, and play baseball. He was born with Tetralogy of Fallot, a heart defect that reduces oxygen in the blood flowing to the rest of the body. Max endured 13 surgeries and now has a pacemaker and an artificial pulmonary valve to assist his heart—his family credits Children’s Hospital Los Angeles (CHLA) with saving his life.

Best known as Mini Darth Vader from , Max has the privilege of using his acting talent to share his personal journey and promote awareness for heart diseases. When he isn't acting or helping local charities, he is busy being a young man—adventurous and active! Max also loves to spend time with his brother, Els. The boys’ brotherly bond holds strong and Els and Max have an extraordinary ability to relate to one another.

May 16

Meet Mallory: 2019 Family Advocacy Champion

Mallory is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Mallory will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Mallory is fierce and tenacious! She enjoys chasing her older brother around, playing “mom” with her dolls, and expressing her opinion about what shoes to wear.

Mallory was born on Valentine’s Day with a congenital heart defect. She had a heart murmur shortly after birth and was referred to a pediatric cardiologist at Duke Children’s Hospital & Health Center. Mallory had her first open-heart surgery at just 14 months old. Despite being young, she showed her determination as she fought through the tears and struggles associated with recovery.

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