Jun 14

Meet Ben: 2019 Family Advocacy Day Child Champion

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

Animated, spirited and creative are the words to describe this 6-year-old boy from Iowa. Like most kindergarteners, Ben is energetic and loud. But there is one thing that makes him different from other schoolmates his age—Ben’s muscles are quickly breaking down and will not restore themselves.

Ben was diagnosed with a rare disease called Duchenne muscular dystrophy (DMD) at age 3. As he’s growing older, he’s starting to physically fall behind his peers and easily become fatigued. Fortunately, the providers and staff at Blank Children's Hospital are an enormous support for him and his entire family.

Jun 13

Meet Hope: 2019 Family Advocacy Day Child Champion

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

Meet Hope! Hope is 13 and loves anything that has to do with music. She plays the piano and sings in her school choir, where her teacher often relies on her for her perfect pitch. This budding actress also just auditioned for her first school play!

Before Hope was even born, her doctors discovered she had complex congenital heart defects and asplenia, meaning her spleen was not functioning normally. She was also diagnosed with cerebral palsy and spastic left hemiplegia, which affects muscle contractions in her left leg. She has had to undergo three different open-heart surgeries and two surgeries on her leg. Thanks to the care she received from St. Joseph’s Children’s Hospital, she was able to go home just three days after her last open-heart surgery!

Jun 12

Meet Nasir: 2019 Family Advocacy Day Child Champion

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

Nasir is a funny, typical 2-year-old boy who loves the movie Moana!

He was born with Tetralogy of Fallot with pulmonary atresia, a severe type of heart defect. Since his diagnosis, Nasir has been receiving care from the cardiologists, nutritionists and gastrointestinal specialists at Nemours Children’s Hospital in Orlando, Florida.

Jun 11

Meet Dillon: 2019 Family Advocacy Day Child Champion

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

Like many other 13-year-old boys, Dillon loves playing Fortnite and getting outside to play sports. Unlike many other 13-year-old boys, Dillon navigates all his favorite activities from his wheelchair. Dillon is excited to start trying out wheelchair rugby, archery and basketball. He never lets his wheelchair stop him from doing what loves!

When Dillon was 11, he was in a major car accident. After 20 days in the ICU and a week in the hospital, Dillon—now paralyzed from the waist down—began occupational therapy. Children's Health played an integral role in Dillon’s journey. The hospital provided not only exceptional medical care, but also social and emotional support.

Jun 10

Meet Sarabeth: 2019 Family Advocacy Day Child Champion

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

Sarabeth is a fighter. Ten years ago, she was diagnosed with embryonal rhabdomyosarcoma at St. Jude Children’s Research Hospital. She went through 48 weeks of chemotherapy and lost her ability to walk.

Despite her condition, Sarabeth was determined to recover—and she did.

Jun 09

Meet Kennedy: 2019 Family Advocacy Day Child Champion

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

Meet Kennedy! Kennedy is 13 years old, and you can always catch her dancing or singing. She also loves anything that has to do with water, in fact, her parents often catch her trying to do dishes in the kitchen! She is always determined to be her best and gets some extra encouragement from her cheerleaders at Children’s National Health System.

Kennedy was born with a unique combination of chromosomal anomalies that contribute to numerous developmental and physical challenges. In fact, she was so unique that doctors had never seen a combination like hers. But this didn’t slow down Children’s National from implementing a health plan involving a diversified team to keep Kennedy on the right track. Now, she requires care from over 30 different specialists, but the entire hospital works hard to ensure the care for this special girl is specialized to her and her family.  

Jun 08

Meet Madison: 2019 Family Advocacy Day Child Champion

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

From a very early age, Madison—lovingly referred to as Maddy—possessed a very strong character and brought lots of laughter and smiles to just about everyone she met. But at the age of 3, she embarked on a life changing journey that was beyond her years–a battle with cancer.

Maddy had been experiencing some discomfort in her right leg and stomach, and her stomach appeared to protrude. After a series of tests, she was diagnosed with stage 4 high-risk neuroblastoma. Further bone scans revealed that the cancer was not only in her abdomen, but also in her lower spine, her shoulders and her hips—she was given only a 30% chance at survival.

Jun 07

Meet Mila: 2019 Family Advocacy Day Child Champion

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

It’s not every day that you have the chance to meet a resilient kid like Mila. She lights up the room with her infectious smile and everyone immediately falls in love with her fun-loving personality.

At only 3 years old, Mila is a fighter. Weighing just 1 lb 10 oz at birth, she was a 23-week micro preemie, born with many chronic conditions, including chronic lung disease, neutropenia, an atrial septal defect, patent ductus arteriosus, and developmental delays.

Mila has silent conditions. When you look at her, she might look healthy without any issues. But because of her low platelet count and neutropenia, it is crucial for her to stay germ-free. A simple runny nose for Mila can turn into something much more serious.

Despite her diagnoses, Mila pushes through the difficult path ahead with her determined spirit. She has experienced several surgeries in her short life, and her will shined through every single medical procedure. She was transferred to The HSC Pediatric Center five months after birth and she has been thriving ever since.  

Jun 06

Meet Jonathan: 2019 Family Advocacy Day Child Champion

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

Jonathan is an adorable curly-haired 5-year-old. Though he doesn’t talk, he still manages to capture the hearts of everyone he meets. He’s resilient and always has a smile on his face!

Jonathan has faced many hurdles since birth, including coronary heart disease, seizure disorder, reactive airway disease and failure to thrive. Luckily, the team at Children’s Hospital at Montefiore has been there for him and his family every step of the way—they’re incredibly grateful for the exceptional care they’ve received there.

Jun 05

Meet Colin: 2019 Family Advocacy Day Child Champion

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

Colin has great curiosity and imagination. He’s usually an easy going, positive little guy—unless it’s time to wake up for school (like most 6-year-olds).

Colin developed like a normal child until he began to have significant respiratory issues and started vomiting sporadically. After being admitted to Children’s Minnesota for pneumonia, Colin was diagnosed with a ganglioglioma, a type of brain tumor.

“Brain tumors are terrifying and the deadliest form of childhood cancers. There’s no real sense of security after you enter this world,” his parents share. “Often, treatments are harsh and contain high risks of complications. It’s a difficult road filled with deep anxiety, social isolation and finding ways to adapt to life-altering disabilities for the child and family.”

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