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.”

Jun 04

Meet William: 2019 Family Advocacy Day Child Champion

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

Despite everything this 9-year-old has been through, William’s resilience and zest for life is amazing. William was diagnosed with sickle cell anemia at birth and has been receiving care at Dayton Children’s Hospital ever since.

William is in and out of the hospital and ER more than ten times per year. Unfortunately, the care he needs meant that he didn’t have a typical 9th birthday celebration. Instead of having a party at home with his friends and family, he spent the day in Dayton Children’s Emergency Department; he had contracted a fever, which for a sickle cell patient is a medical emergency.

Jun 03

Meet Gage: 2019 Family Advocacy Day Child Champion

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

Nine-year-old Gage is always happy and can do anything he sets his mind to. This tenacious fighter was not supposed to survive birth, but he has spent the past nine years proving everyone wrong.

When Gage’s mother was just 20 weeks pregnant, a sonogram showed something was off—his bones were breaking. An amniocentesis revealed that Gage had osteogenesis imperfecta—also known as brittle bone disease. Because his bones were so fragile, doctors feared his ribcage would break and his lungs would collapse.

Jun 02

Meet Elyse: 2019 Family Advocacy Day Child Champion

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

Elyse is fascinated by baked goods, but she hates the taste of sugar and would never eat anything sweet. Despite her aversion, this hard worker shatters her goals when selling Girls Scout cookies!

Even though Elyse looks like a normal teen when you first meet her, she struggles on a daily basis. Elyse was diagnosed with chronic intestinal pseudo obstruction shortly after birth and has lived in and out of UCLA Mattel Children’s Hospital for the past 12 years. She has endured numerous surgeries and clinic visits and relies on five different specialists.

Despite all of this, Elyse doesn’t for one moment want pity. She shares, “I am not defined by my condition. I want to make sure that others don't feel shame just because they are different. I am more than my diagnosis.”

Jun 01

Meet Taylor: 2019 Family Advocacy Day Champion

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

“Courageous” and “amazing” are the best words to describe Taylor, and she applies these traits to everything she does!

Now 22, Taylor was diagnosed with cancer at the age of 10 and was referred to Connecticut Children’s Medical Center (CCMC). Taylor and her family were greeted with a warm welcome, a teddy bear and friendly smiles.

Her long journey at CCMC began with a surgery to remove a Wilms tumor and her right kidney, and continued with months of chemotherapy and years of follow up with routine scans. During one of her scans, doctors discovered pectus excavatum which would later require another surgery. They also discovered gallstones in her gall bladder—this too eventually mandated a surgery for Taylor.

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