Jun 16

Meet Gabe: 2018 Family Advocacy Day Champion

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

Gabe is wise beyond his years. His parents and friends describe him as an “old soul,” and not at all like a typical teenager; that, his parents say, is what makes him special.

Before he had time to grow into the thoughtful young man he is today, Gabe received nearly 50 medical procedures, including two open-heart surgeries, to treat double outlet right ventricle and hypoplastic left ventricle — congenital heart defects. Gabe would not be here today without specialized medical intervention, his condition would have been fatal.

Jun 15

Meet Tenley: 2018 Family Advocacy Day Champion

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

Tenley loves to smile, dance and clap. You might never know that this happy 2-year-old has had two open heart surgeries in the first four months of her life. When her mom was just 20 weeks pregnant, Tenley was diagnosed with hypoplastic left heart syndrome, a birth defect that affects blood flow through the heart.

Before her second surgery, Tenley went into cardiac arrest and was put on cardiac and respiratory support. Her parents worried that her conditions may not improve. But the staff at Texas Children’s Hospital did not give up on Tenley.

Jun 14

Meet Naomi: 2018 Family Advocacy Day Champion

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

Naomi is a social butterfly. She adores people, and makes new friends everywhere she goes. When she isn’t meeting new people, she enjoys riding her adaptive tricycle, coloring and playing board games. But while 9-year-old Naomi is now happy and social, she was once in a coma and vegetative state for 44 days due to an arteriovenous malformation (AVM) rupture in her brain.

Naomi received excellent, and extensive, treatment at Advocate Children’s Hospital — she was treated for six weeks in the pediatric ICU. During that time, she had multiple brain surgeries, a tracheal tube placement and a g-tube placement. She then spent over six months in pediatric in-patient care, and has since spent over a year receiving out-patient therapy.

Jun 13

Meet Michael: 2018 Family Advocacy Day Champion

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

Michael enjoys life. He is always smiling and trying to make sure others are smiling as well. Michael loves watching and participating in many different sports — soccer, basketball, baseball, and just running around are among his favorite activities.

Michael was also born with Apert syndrome, a rare condition that causes his bones to fuse together. Michael has received treatment at Gillette Children's Specialty Healthcare since he was just two months old.

Jun 12

Meet Marina: 2018 Family Advocacy Day Champion

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

Marina is a compassionate, creative and talented girl who amazes and inspires everyone she meets. She loves swimming, cheerleading and hanging with family and friends. If you met Marina today, you might never know that she has successfully overcome 23 surgeries.

Now 11-years-old, Marina was born with giant omphalocele — a type of abdominal wall defect in which her bowel, liver, stomach, spleen and small intestines protruded out of the abdomen. She spent 10 months in the neonatal intensive care unit at Johns Hopkins All Children’s Hospital before going home on life support.

Jun 11

Meet Alex: 2018 Family Advocacy Day Champion

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

Alex bravely reaches towards the future. Though his parents feared he might not survive his early years, Alex has faced his medical challenges head on and learned to prosper in spite of them.

Like his sister, Maddy, Alex has mitochondrial disease; he also has been diagnosed with adrenal insufficiency, immune deficiency, dysautonomia, chronic intestinal pseudo-obstruction and pancreatitis.

Due to these serious conditions, Alex’s care is very complex and ongoing. He requires major interventions to remain stable and his medical status changes frequently.

Jun 10

Meet Sam: 2018 Family Advocacy Day Champion

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

Every now and then, all children will let their mind wander away from a teacher’s instruction in the classroom. But for 9-year-old Sam, a host of medical conditions make it exceptionally difficult for him to focus and learn in school.

Sam contends with Fragile X syndrome, which is a congenital condition that causes a range of developmental problems including learning disabilities and cognitive impairment. He also has autism, an anxiety disorder, and ADHD.

Jun 09

Meet Richie: 2018 Family Advocacy Day Champion

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

Richie was born with congenital fiber-type disproportion myopathy as a result of an RYR1 gene mutation, a rare condition that affects his muscle function. Because of his significant health care needs, he has received treatment at UH Rainbow Babies & Children's Hospital since birth.  

Treated in the NICU immediately after he was born, Richie then spent two months in the pediatric ICU. He currently sees 11 pediatric specialists and occasionally requires hospital stays due to respiratory illness. But despite his complex condition, Richie is stable and healthy today!

Jun 08

Meet Nova: 2018 Family Advocacy Day Champion

Boston_Children's_Hospital_Cox__Nova_3.jpegNova is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Nova will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Nova is an outgoing 8-year-old from Massachusetts who loves to read, build with Legos, play piano, and hang out with her friends.

Nova was also born with a rare craniofacial anomaly called Pfeiffer Syndrome. It affected the growth of bones in her skull, face, neck and arms, causing them to fuse before she was born.

Jun 07

Meet Lucas: 2018 Family Advocacy Day Champion

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

You can’t help but smile when you meet Lucas. He is a charismatic, energetic and intelligent 11-year-old always proud to advocate for others. He is excited to join Speak Now for Kids in the nation’s capital to tell lawmakers that children’s hospitals are not just important for families with kids born in need of serious care — they are important for everyone.

When Lucas was 7 years old, he accidentally knocked a pot of boiling water onto his face and shoulder, receiving second and third degree burns. He was wearing a sweatshirt at the time of the accident; because the water absorbed in the fabric had prolonged contact with the skin, his burns were even more severe under it.  

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