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.

Jun 03

Meet Jaime: 2018 Family Advocacy Day Champion

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

It is not every day you get to meet a kid like Jaime. He lights up any room he is in with his infectious smile, and everyone he meets falls in love with his boundless sense of humor.

At only 5 years old, Jaime is wise beyond his years. He has learned in his few short years what it takes most of us a lifetime to understand: if he sets his mind to it, he can accomplish anything!

Jun 02

Meet Jacoby: 2018 Family Advocacy Day Champion

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

Imagine being told that your baby’s life would end before it even began. That’s what Jacoby’s parents were told after the doctors diagnosed her with hydrops fetalis, a condition that occurs when large amounts of fluid build-up in a baby's tissues and organs causing extreme swelling — it can be fatal. 

Jacoby was given a 5 percent chance of survival. If she did survive, doctors predicted that Jacoby would not be able to sit-up, walk, talk or eat on her own.

Jun 01

Meet Kayla: 2018 Family Advocacy Day Champion

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

Kayla is not only a happy and social young woman; she is a Boston Marathon participant. She and her mom are the first mother-daughter wheelchair team to finish the marathon in its 117-year history.

Additionally, she has been an advocate for promoting inclusion in her community, and has a knack for making anyone smile. Kayla’s incredible achievements do not stop there — she has always done the unexpected.

May 31

Meet Zion: 2018 Family Advocacy Day Champion

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

Zion is a creative, compassionate, spicy girl who loves to live life out loud. At any given time, you might find this 10-year-old stuck in a book, at the computer writing a new story, or creating an iMovie. She also enjoys cooking and loves to make cupcakes without recipes — you should really try her apple cupcakes one day!

This young baker lives right in the middle of an older brother and young sister who both have sickle cell disease. Sickle cell has certainly made life different, and sometimes difficult, for Zion and her entire family, but dealing with this chronic condition has also brought the family closer and made them stronger.

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