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.

May 15

Healthy Minds, Healthy Kids

May is Mental Health Month. Today, Leah Colburn, Suicide Prevention Coordinator at Intermountain Primary Children's Hospital, shares how you can provide support to a person who has mental health needs. 

What if a child came to you with a pain in their arm? If there is no obvious bruise, cut or bump, you’d ask what happened. You’d listen to their story, give them ice and a hug. You’d sit with them until the tears slowed—but what if it still hurts when they play? Even though you couldn’t see the injury, you’d still know they are hurting and it’s impacting their day, so you would make the choice to take them to the doctor.

When someone is coughing, looks pale, or thinks they may be getting the flu, we accept it and encourage them to rest, take time off work or school, and go to the doctor if it gets worse. We take care of them. We know what to do when our children, family and friends become ill or injured. What if we offered the same support for a person whose brain may not be feeling well?

May 15

Meet Chase: 2019 Family Advocacy Day Champion

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

Chase is a happy, content teen with a fantastic disposition. He loves to attend school, ride his bike and cheer for his sister’s softball team. He’s a terrific brother and an immense source of pride to his mother.

This 15-year-old was born with Dandy-Walker malformation, a congenital defect that affects his movement, behavior and cognitive ability. After diagnosis, Chase and his family were airlifted from a community hospital to begin treatment at Children's Hospital at Dartmouth-Hitchcock.

Unfortunately, Chase’s current condition is still complex—his neurological conditions have been heightened since he hit puberty. During winter seasons, he also suffers from pneumonia and pulmonary issues. In fact, Chase has needed inpatient care four times in the past six months due to pneumonia.

May 14

Meet Morgan: 2019 Family Advocacy Day Champion

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

Morgan has had a big heart for animals from a very early age. Her pony, Oliver, is her greatest passion! She loves to groom Oliver and has even competed in competitions with her best friend.

At 2 years old, Morgan embarked on a life changing journey that was beyond her years—a battle with idiopathic dilated cardiomyopathy, which leads to severe heart failure.

While waiting for her heart transplant at Medical University of South Carolina Children’s Health (MUSC), Morgan became just the 3rd child  to ever receive the Berlin heart, a type of ventricular assist device to do what Morgan’s heart could not: pump blood throughout her tiny body. With tubes attached to Morgan’s body, the Berlin heart went wherever Morgan went.

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