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.

May 14

Meet Rowan: 2019 Family Advocacy Day Champion

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

Rowan is a super energetic 4-year-old who loves to cook cheese quesadillas, go horseback riding and swim in the pool. You can always find her laughing and telling jokes, despite the pain she experiences every day.

Rowan was diagnosed with recessive dystrophic epidermolysis bullosa as a newborn, which means that she is missing the “glue” that holds her skin to her body. The surface of her body can blister and shear off leaving wounds like second-degree burns, so Rowan must be bandaged from the neck down to cover wounds and prevent infection.

May 12

Meet Derell: 2019 Family Advocacy Day Champion

Derell is a charming and funny 9-year-old who loves to dance and draw. When Derell was 7, he had trouble staying focused in school and following all the rules. He was repeatedly disciplined for fidgeting, tapping his pencil and talking out of turn. Even worse, he was starting to show signs of depression because of his struggles at school and with his peers.

His mom, Etta, was frustrated too. She was called into school nearly every day because of Derell’s behavior issues. When Children’s Hospital of Wisconsin opened the Midtown Clinic close to her home, Etta jumped at the chance to take her son there. Derell started seeing a Children’s Hospital of Wisconsin pediatrician, and screenings showed that his challenges with attention and self-regulation were contributing to his problems. The team at the Midtown Clinic was called into action right away.

Derell was offered access to the integrated behavioral health program, where pediatricians and behavioral health providers work together as a team to tailor their care specifically to him. Once he was receiving the right care, Derell’s behavior transformed rapidly. His condition progressed quickly as he learned how to positively cope with challenging situations that occur at home and school.

May 11

Meet Jakob: 2019 Family Advocacy Day Champion

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

Looking at Jakob now, you would never know that this little guy has spent majority of his life in the hospital. This 4-year-old warrior has undergone countless surgeries and seen hundreds of doctors, but he still somehow manages to smile and fist bump everyone he meets!

Jakob was diagnosed with an extremely rare genetic disease called microvillus inclusion disease—essentially, his intestines fail to absorb nutrients. At 2-days-old, Jakob failed to thrive. He would not have survived if his parents hadn’t brought him to the hospital in time. Jakob has gone from an extremely sick baby to a vibrant active boy thanks to the help of C.S. Mott’s Children’s Hospital.

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