May 30

Meet Daniela: 2018 Family Advocacy Day Champion

Nicklaus_Children's_Hospital_Alvarez__Daniela.ver.2.jpgDaniela is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Daniela will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

On June 26, 2009 — her second birthday — Daniela was diagnosed with an atypical teratoid rhabdoid tumor (ATRT), a rare, aggressive and very malignant type of brain cancer.

To treat her cancer and prevent its return, Daniela has endured:

  • Brain surgeries
  • 60 weeks of aggressive chemotherapy
  • 3 months of radiation to her brain
  • Hundreds of MRIs and other imaging scans
  • Multiple visits to the Pediatric Intensive Care Unit
  • Quarantine from other kids her age — even her own sisters
  • Countless numbers of blood and lab tests

But through it all, Daniela has stayed strong.

May 29

Meet Annelise: 2018 Family Advocacy Day Champion

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

Annelise was 3 years old when the symptoms of lupus — a chronic autoimmune disease that can cause damage to a person’s skin, joints and organs — first appeared. But it would be another five years until Annelise’s mother, Cheryl, had a definitive diagnosis.

“We were given mixed and confusing information for a period of time with diagnoses of other autoimmune diseases,” recalls Cheryl. “We didn’t receive a concrete diagnosis until we met with a rheumatologist at Connecticut Children’s Medical Center.”

May 28

Meet Brynn: 2018 Family Advocacy Day Champion

C.S._Mott_Children's_Hospital_Altizer__Brynn_2.jpgBrynn is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Brynn will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Brynn begins every day with a smile and a hug. She enjoys playing and singing with her older brother, Nicholas, and is excited about the prospect of starting kindergarten in a few years. To meet Brynn today, you might never know she spent almost the entire first year of her life in the hospital.

She and her twin brother, Will, were born 14 weeks and 6 days premature with underdeveloped lungs. In the first few days, the twins thrived. But at day five, Will’s health deteriorated and he passed away from pseudomonas sepsis and respiratory distress.

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.

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