May 27

Meet Jaden: 2018 Family Advocacy Day Champion

Children's_Hospital_Colorado_Brown__Jaden.jpgJaden is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Jaden will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Eight-year-old Jaden loves all things about his home state of Colorado — from camping and fishing to the Denver Broncos. But before he could discover his love of Colorado’s landscape, Jaden spent a lot of time in the hospital. When he was born, Jaden suffered a stroke that caused damage to his brain.

He was later diagnosed with hydrocephalus, an incurable condition in which fluid builds up deep within the brain. Jaden's parents were once told that their son may never be able to walk or talk — but this tenacious warrior has worked hard to progress beyond what anyone thought possible.

May 26

Meet Jackson: 2018 Family Advocacy Day Champion

John_R._Oishei_Children's_Hospital_Marchetta__Jackson.jpgJackson is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Jackson will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

As all parents know, sometimes a rash is just a rash — inconvenient and uncomfortable for children, but nothing to worry about. But for young Jackson, a rash was a sign of a more serious health problem. When he was 2-years-old, his mother noticed the small rash on his cheek which soon spread to his face, arms, legs and torso.

Eventually, Jackson developed open sores on his knuckles and weakness in his legs. The once healthy and sure-footed toddler began falling constantly.

May 25

Meet Jacari: 2018 Family Advocacy Day Champion

Children's_Hospital_of_San_Antonio_Offett__Jacari.jpgJacari is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Jacari will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Jacari is a young man headed into adulthood with strong opinions about important topics and a bright vision of his future. Currently a sports athletic trainer at his high school, Jacari plans to focus on this field in college to make a career out of his passion.

This young man has come a long way since, at 18 months old, an evaluation team from a local university concluded he would never be able to walk or talk.

May 24

Meet Grant: 2018 Family Advocacy Day Champion

Children's_Hospital_of_Philadelphia_Lorelli__Grant.jpgGrant is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Grant will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Grant was healthy the first several years of his life. But a few months after his eighth birthday, he developed digestive issues and lost a tremendous amount of weight. Figuring out a cause took time, but he was eventually diagnosed with Crohn’s disease — an inflammation of the digestive tract that can cause abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. 

May 23

Meet Jasmine: 2018 Family Advocacy Day Champion

Yale_New_Haven_Children's_Hospital_Gardner__Jasmine_2.jpgJasmine is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Jasmine will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Jasmine is a healthy and vibrant 6-year-old — her parents describe her as “full of spirit and beautiful to boot.” Her smile is contagious, her hugs are warm, and sharing laughter with others comes as second nature. If you were ever lucky enough to meet her, you might never know that at just 2 years old she was diagnosed with a high-risk neuroblastoma — cancer.

May 22

Meet Leeya: 2018 Family Advocacy Day Champion

Le_Bonheur_Children's_Hospital_Alperin__Leeya.jpgLeeya is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Leeya will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Seventeen-year-old Leeya is as strong and compassionate as she is beautiful. A fun, smart young lady, Leeya has endured multiple life-changing events since being diagnosed with a vascular anomaly that impacted her lymphatic system more than 18 months ago.

May 21

Meet Lucia: 2018 Family Advocacy Day Champion

St._Joseph's_Children's_Hospital_Ferlita__Lucia.jpgLucia is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Lucia will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Lucia, aka Lucy, is a bright and social 5-year-old girl with a natural love for learning. She is eagerly awaiting her kindergarten debut — she’ll attend her neighborhood elementary school five days a week starting next year!

Lucy’s kindergarten experience is sure to be the amazing adventure it is for all kids, but her school days will be a bit unique, as she’ll do it all with a private-duty nurse by her side. Lucy is the only person living in the United States with a diagnosis of EMARDD, or early onset myopathy with areflexia, respiratory distress and dysphagia.

May 20

Meet Claire: 2018 Family Advocacy Day Champion

Children's_Hospital_of_Michigan_Wyckoff__Claire.jpgClaire is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Claire will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Like many 10-year-olds, Claire was an incredibly active kid. In fact, it was while doing a cartwheel that the first signs of Claire’s health problems arose. What initially was thought to be a pulled muscle on her arm led to a diagnosis of arteriovenous malformation (AVM) of the cervical spine.  

AVM is a rare, abnormal tangle of blood vessels in or near the spinal cord that can lead to a host of serious health conditions — including paralysis and loss of bowel or bladder control.

Claire was immediately admitted to the PICU at Children’s Hospital of Michigan, where she eventually had surgery to remove the AVM located in her neck-area along the spine.

May 19

Meet Christian: 2018 Family Advocacy Day Champion

Children's_Specialized_Hospital_Panarese__Christian.jpgChristian is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Christian will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

When he and his parents arrived at Children's Specialized Hospital, then 9-month-old Christian had no mobility. He could not swallow, eat, or sit up, and he cried constantly. Unable to hold anything in his right hand and totally without function in his left, Christian was diagnosed with cerebral palsy, hydrocephaly and quadriplegia by 10 months.

But with his parents’ love and the hospital team’s compassionate and dedicated commitment to helping the entire family, Christian began to make progress. His feeding became less challenging and his choking reduced; he developed the skill to hold a sippy cup.

May 18

Meet Charlie: 2018 Family Advocacy Day Champion

Children's_Minnesota_Tietel__Charlie.jpgCharlie is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Charlie will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

More than likely, it was mother’s intuition that saved Charlie’s life. Born in August 2015, Charlie’s mother, Shelby, felt like something just wasn’t right with her infant son.

At two-months-old Charlie was diagnosed with two congenital heart conditions — mitral stenosis and mitral regurgitation — and pulmonary hypertension, a type of high blood pressure that affects the arteries the lungs and the right side of the heart.

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