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.  

Jun 06

Meet Logan: 2018 Family Advocacy Day Champion

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

Logan has been through a lot since he was born four years ago, but you’d never know it. An active preschooler who loves superheroes and running around outside, he’s one tough and resilient kid.

At birth, Logan failed his newborn hearing screen. The doctors at the hospital recommended that his hearing be tested further. At just 5 weeks of age, Logan was diagnosed with bilateral profound sensorineural hearing loss — he had been born deaf.

Jun 05

Meet Maddy: 2018 Family Advocacy Day Champion

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

Maddy is a beautiful 4-year-old with a radiant smile and a limitless sense of humor. She has already exhibited a lifetime’s worth of determination and energy, and she shows no sign of slowing down soon. Her next adventure is to join us in Washington to advocate on behalf of herself, her brother and kids around the country.

Like her big brother, Alex, Maddy has been diagnosed with mitochondrial disease; she also struggles with immune deficiency and disaccharide deficiency. Mitochondrial disease is a serious condition without a cure — it requires lifelong medication and therapy.

Jun 04

Meet Luis: 2018 Family Advocacy Day Champion

Children's_Health_Children's_Medical_Center_Dallas_Collazo__Luis.jpgLuis is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Luis 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 was just a few months old, Luis’ general pediatrician suggested he see a specialist to get a quick diagnosis for an issue he was having — that quick diagnosis saved his life. Today, at 12 years old, Luis is already a published author and committed advocate. But just after that referral, he was a 7-month-old fighting for his life.

Luis was referred to an ophthalmologist who requested an MRI and then referred him to the Center for Cancer and Blood Disorders — he was diagnosed with unilateral retinoblastoma, a rare cancer of the retina.

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