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.

May 31

Meet Charlee: 2019 Family Advocacy Day Child Champion

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

Meet William: 2019 Family Advocacy Day

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.

May 29

Meet Eleanor: 2019 Family Advocacy Child Champion

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

Eleanor loves the color blue in every shade. She is an energetic girl, beaming with personality. Her favorite phrase is "BEST DAY EVER!"

Eleanor was diagnosed with multiple congenital heart defects at birth. With her survival at stake, she was on full life support right after she was born. The doctors at Norton Children’s Hospital informed her parents that a heart transplant was the only option, and 10 days later Eleanor was added to the national waiting list.

May 28

Meet Geno: 2019 Family Advocacy Day Child Champion

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

Geno was diagnosed at his 21-week ultrasound with complete heart block and hydrops fetalis. His family immediately rushed to the Pediatric Cardiology Department at Cleveland Clinic Children’s to increase his odds of survival.

His parents understood that Geno only had a 5-10% chance of survival, but this heart warrior fought against those odds! Geno was born at 29 weeks and discharged five months later. He went home with supplemental oxygen and a nasogastric tube for food and medicine, but this young fighter made it home. Even though Geno faced many challenges as a premature baby, they did not define or limit his potential in any way.

May 26

Meet Lorenzo: 2019 Family Advocacy Day Child Champion

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

When Heather was pregnant with her third son, Lorenzo, she had a routine prenatal anatomy scan. The test showed that something was wrong—blood was flowing in the wrong direction through Lorenzo’s little heart.

Before Lorenzo was born, he was diagnosed with severe aortic stenosis, aortic valve regurgitation, mitral valve regurgitation, and evolving hypoplastic left heart syndrome (HLHS). His condition was so severe that it was unlikely he could survive the pregnancy without an intervention.

May 25

Meet Maddox: 2019 Family Advocacy Day Child Champion

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

Maddox is extremely loving and outgoing! He smiles all the time and loves meeting new people. Even though Maddox has been through so much in just three years of life, this joyful little boy managed to bounce back quickly and happily.

At birth, Maddox was diagnosed with Down syndrome and an atrioventricular canal defect—his heart had several holes and only one valve. Unfortunately, the hospital in Maddox's home state, Maine, doesn’t have any pediatric cardiac surgeons. His family acted quickly and called Boston Children’s Hospital to get the best care for Maddox. A few days later, Maddox was flown by air ambulance to Boston and transferred to the cardiac intensive care unit. At only 7-weeks-old and weighing barely five pounds, Maddox had open-heart surgery. Thankfully, he has been thriving ever since.

May 24

Meet Nick: 2019 Family Advocacy Champion

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

From a young age, Nick has been obsessed with Legos. He even had the chance to visit Legoland in Denmark with Make-A-Wish Foundation!

Nick was born with craniosynostosis, a brain disorder where the bones of his skull closed prematurely. Nick had his first surgery with Dr. Canady from University of Iowa Stead Family Children’s Hospital at six months old to separate the cranium bones and reconstruct his orbital bones, eye sockets and forehead. 

May 23

Meet Austin: 2019 Family Advocacy Day Child Champion

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

To describe Austin in word, you would have to say “courageous”. This 12-year-old is currently in middle school and refuses to let anything slow him down.

Austin was diagnosed with limb-girdle muscular dystrophy, a serious, rare and debilitating form of the disease. Unfortunately, Austin’s condition is progressive—it causes muscle wasting, which has led to increases in falls, the use of a wheelchair and his inability to walk upstairs.

Through frequent physical and occupational therapy care at Children's Hospital of Richmond at VCU, his family hopes to maintain his current level of mobility and function for as long as possible. Without his children’s hospital, Austin would not have access to the specialized care he needs. He currently depends on a whole team of pediatric specialists, including neurologists, cardiologists, orthopedists and more.

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