Jun
08
Posted by Champion for Children's Health
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
Posted by Champion for Children's Health
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
Posted by Champion for Children's Health
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
Posted by Champion for Children's Health
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
Posted by Champion for Children's Health
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
Posted by Champion for Children's Health
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
Posted by Champion for Children's Health
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
Posted by Champion for Children's Health
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.
May
31
Posted by Champion for Children's Health
Charlee is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Charlee will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Charlee is a very motivated 9-year-old from Rhode Island. She was born prematurely at 30 weeks and diagnosed with periventricular leukomalacia at Boston Children’s Hospital. Unfortunately, as Charlee grew older, her diagnosis progressed to cerebral palsy.
Her delays are most significant in gross motor skills—she’s still learning to stand and walk independently. She wears bilateral ankle foot orthotics and utilizes a walker or wheelchair stroller to travel longer distances.
May
30
Posted by Champion for Children's Health
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.
William had a hard start at life. From day one, the odds of survival for this twinless twin and micro preemie were low. He was born at 23 weeks weighing just 1lb 6 oz. William suffered seemingly endless bumps in the road, including bleeding in his lungs, numerous blood transfusions and surgeries, and a dangerous stomach infection called necrotizing enterocolitis (NEC). Despite these obstacles and challenges, this miracle micro preemie persevered—he survived it all.