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.

Jun 15

Meet Jordyn: 2019 Family Advocacy Day Child Champion

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

Meet Jordyn! Jordyn is a very bubbly, energetic 8-year-old, who never stops moving. Jordyn is always looking out for other people—even when she is in the hospital, she tries to find ways to help the other children. When she’s not doing cartwheels or cheerleading, she’s trying to figure out ways to make other people happy.

Born four weeks premature, Jordyn spent her first few months of life in the Neonatal Intensive Care Unit at the Children's Hospital of San Antonio. She was diagnosed with hydrocephalus, annular pancreas, malrotation of the intestines, and an atrial septal defect. In addition, Jordyn was born with only one kidney, missing and fused ribs, scoliosis, and a tethered spinal cord.

Jun 14

Meet Ben: 2019 Family Advocacy Day Child Champion

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

Animated, spirited and creative are the words to describe this 6-year-old boy from Iowa. Like most kindergarteners, Ben is energetic and loud. But there is one thing that makes him different from other schoolmates his age—Ben’s muscles are quickly breaking down and will not restore themselves.

Ben was diagnosed with a rare disease called Duchenne muscular dystrophy (DMD) at age 3. As he’s growing older, he’s starting to physically fall behind his peers and easily become fatigued. Fortunately, the providers and staff at Blank Children's Hospital are an enormous support for him and his entire family.

Jun 13

Meet Hope: 2019 Family Advocacy Day Child Champion

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

Meet Hope! Hope is 13 and loves anything that has to do with music. She plays the piano and sings in her school choir, where her teacher often relies on her for her perfect pitch. This budding actress also just auditioned for her first school play!

Before Hope was even born, her doctors discovered she had complex congenital heart defects and asplenia, meaning her spleen was not functioning normally. She was also diagnosed with cerebral palsy and spastic left hemiplegia, which affects muscle contractions in her left leg. She has had to undergo three different open-heart surgeries and two surgeries on her leg. Thanks to the care she received from St. Joseph’s Children’s Hospital, she was able to go home just three days after her last open-heart surgery!

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