Jul 01

Meet Roshanae: 2019 Family Advocacy Day Child Champion

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

Roshanae is a policy wonk who loves to watch CSPAN—she even watches during her stays in the hospital!

Roshanae has been receiving treatment for sickle cell disease at UCSF Benioff Children's Hospital Oakland since she was diagnosed at age 4. Sickle cell disease gets worse with age, so Roshanae has had to endure more hospital visits as her condition progresses. Now 20, she continues to travel hundreds of miles from her college in Riverside to receive the care she needs in Oakland.

Jun 30

Meet Hailey: 2019 Family Advocacy Day Child Champion

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

Hailey is an extraordinarily strong minded 11-year-old who loves to sing and dance.

An unthinkable event happened when Hailey was a two-year-old, she fell in the bathtub and broke her neck. The accident had left Hailey paralyzed from the neck down, unable to move her arms and legs, and the long-term outlook was disheartening.

“They told us she wouldn’t ever talk, wouldn’t be able to eat on her own, wouldn’t be able to walk — wouldn’t be able to do anything,” said Hailey’s grandmother.

Hailey met Dr. Keane at Mt. Washington Pediatric Hospital (MWPH) who specializes in working with children with complex medical needs. Hailey started an intense course of weekly therapy, including physical therapy to help her move around and occupational therapy to help her with activities of daily living. She bonded with her therapists and looked forward to each appointment as a special sort of playtime.

Jun 29

Meet Conner: 2019 Family Advocacy Day Child Champion

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

Conner is fearless and determined. He loves to sing songs, especially Shimmy Shimmy Coco Pop from the movie Big, and the theme song of Beauty and the Beast!

Conner was born premature at 25 weeks and experienced many associated conditions including cerebral palsy, seizures, developmental delays and blindness. Despite being born at a hospital that had a NICU, Conner’s rare medical needs required him to be airlifted to the Children’s Hospital of Philadelphia (CHOP). Since the doctors at CHOP are trained to treat children with similar medical conditions as Conner, he began to show improvement.

Jun 22

Meet Jack: 2019 Family Advocacy Day Child Champion

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

Jack loves going for walks, playing with his sister and watching Peppa Pig.

Jack was born six weeks early. This young fighter spent about four months in the NICU at Yale New Haven Children’s Hospital and was eventually diagnosed with cerebral palsy. Today, he relies on seven specialists to get the care he needs.

Thanks to the doctors, nurses and specialists at Yale Children’s, he was able to progress from having a tracheostomy and being tube fed to being trach-free and eating by mouth— all in less than three years! Dr. Palazzo has played a huge role in Jack's progress and success. She’s patient, parent-oriented and goes above and beyond to ensure that all Jack’s needs are met and all options are explored.

Jun 21

Meet Paul: 2019 Family Advocacy Day Child Champion

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

Meet Paul! Paul is a special little 3-year-old whose favorite activities include brushing his teeth and taking baths. One of his favorite memories is meeting Santa at John R. Oishei Children’s Hospital!

Paul has spent a lot of time in the hospital during his short life. Before he was even born, testing found that Paul had Trisomy 21, or Down syndrome. When he was just 6 months old, the neurosurgery department at Oishei Children’s discovered that Paul’s spinal cord was tethered as they performed a routine evaluation to clear him for surgery. Without this timely discovery, Paul may not have been walking today. Doctors also discovered hydronephrosis, a kidney obstruction that required urologists to keep him under close supervision initially. Further, because Paul has Down syndrome, he was born with anatomical differences in his cranial structure that impacted his ability to breathe. Thankfully, the Ear, Nose, and Throat team at Oishei Children’s was able to remove his adenoids and tonsils at an early age to address these issues.

Jun 20

Meet Halle: 2019 Family Advocacy Day Child Champion

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

Halle likes to be cuddled, sit on the couch, and listen to her grandfather—Pops—play the piano. While she finds an incredible amount of joy in life, this 9-year-old faces many challenges every day just to survive and thrive as best as she can.

Halle was diagnosed with an extremely rare genetic change that affects the calcium channels. This rare condition causes developmental delays, hearing loss, seizures, stroke and other difficulties. Every day, Halle has to work hard just to breath, swallow and sit up.

Jun 19

Meet Abby and Belle: 2019 Family Advocacy Day Child Champions

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

Meet Belle and Abby—two sisters who have endless love for others, especially each other. When Belle was 5 years old, genetic tests showed that she had Niemann- Pick Disease Type C1 (NPC1). NPC1, often referred to as childhood Alzheimer’s, is a rare, degenerative genetic disease affecting all cells of the body. Due to the genetic nature of the disease, Abby underwent testing as well—she also had NPC1.

Jun 18

Meet Jaysen: 2019 Family Advocacy Day Child Champion

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

Jaysen had been complaining of headaches for two weeks—his teacher initially thought they might be due to dehydration from playing outside. But after a phone call from school, Jaysen’s mom quickly rushed him to the hospital—he said he felt like his head was going to explode.

An MRI from Lurie Children’s Hospital confirmed that Jaysen had a brain tumor. While the neurosurgeon was able to remove the entire tumor during a six-hour surgery, the bad news was that it was an aggressive, malignant form called a medullablastoma. Jaysen would need both radiation treatments and chemotherapy to kill any remaining cancerous cells.

Jun 17

Meet Rafa: 2019 Family Advocacy Day Child Champion

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

Meet Rafa! Despite being only 3 years old, Rafa loves to spend time reading—in both English and Spanish—and has an incredible memory. Some of his favorite things to do are visiting the science museum and going to the playground with his family.

Rafa was born with chronic kidney disease and severe bladder issues, which meant undergoing several surgeries, five weeks in the neonatal intensive care unit and nightly dialysis just to survive. When he was only a year old, he received a kidney transplant from his dad—this gift was instrumental in making him the thriving, happy youngster he is today. Rafa still needs a feeding tube to eat, but he is working towards gaining more independence!

Jun 16

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 a brave, thoughtful and a creative 5-year-old. His favorite activities are usually those he can share with others, like playing board games and video games.

Last year, Jonathan was running around his preschool without a care in the world when his teacher noticed that his left eye seemed to be turning in occasionally. An MRI at Akron Children’s Hospital revealed that Jonathan had a golf-ball sized tumor near his brain stem. He was diagnosed with medulloblastoma and soon began treatment with radiation.

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