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.

May 30

Meet Daniela: 2018 Family Advocacy Day Champion

Nicklaus_Children's_Hospital_Alvarez__Daniela.ver.2.jpgDaniela is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Daniela will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

On June 26, 2009 — her second birthday — Daniela was diagnosed with an atypical teratoid rhabdoid tumor (ATRT), a rare, aggressive and very malignant type of brain cancer.

To treat her cancer and prevent its return, Daniela has endured:

  • Brain surgeries
  • 60 weeks of aggressive chemotherapy
  • 3 months of radiation to her brain
  • Hundreds of MRIs and other imaging scans
  • Multiple visits to the Pediatric Intensive Care Unit
  • Quarantine from other kids her age — even her own sisters
  • Countless numbers of blood and lab tests

But through it all, Daniela has stayed strong.

May 29

Meet Annelise: 2018 Family Advocacy Day Champion

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

Annelise was 3 years old when the symptoms of lupus — a chronic autoimmune disease that can cause damage to a person’s skin, joints and organs — first appeared. But it would be another five years until Annelise’s mother, Cheryl, had a definitive diagnosis.

“We were given mixed and confusing information for a period of time with diagnoses of other autoimmune diseases,” recalls Cheryl. “We didn’t receive a concrete diagnosis until we met with a rheumatologist at Connecticut Children’s Medical Center.”

May 28

Meet Brynn: 2018 Family Advocacy Day Champion

C.S._Mott_Children's_Hospital_Altizer__Brynn_2.jpgBrynn is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Brynn will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Brynn begins every day with a smile and a hug. She enjoys playing and singing with her older brother, Nicholas, and is excited about the prospect of starting kindergarten in a few years. To meet Brynn today, you might never know she spent almost the entire first year of her life in the hospital.

She and her twin brother, Will, were born 14 weeks and 6 days premature with underdeveloped lungs. In the first few days, the twins thrived. But at day five, Will’s health deteriorated and he passed away from pseudomonas sepsis and respiratory distress.

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