May 17

2015 Family Advocacy Day Hero -- Chase

Flaherty.Chase.ver.2.jpgChase was born at only 27 weeks gestation. He was diagnosed at birth with cerebral palsy, a stage 4 brain bleed, chronic lung disease and asthma due to his prematurity. At just 3 years old, he is currently receiving physical, occupational and speech therapy. Chase sees a lung specialist for asthma, and has had eye surgery from an issue caused by a seizure. Regular visits to a neurologist help make sure he is hitting his milestones as well as providing a regular opportunity to monitor the brain bleed.

May 16

2015 Family Advocacy Day Hero -- Everett

Ediger.Everett.jpgThanks to a prenatal diagnosis, Everett’s parents knew he would be born with spina bifida, a birth defect that impacts how the spine is formed in utero. His brain was also affected so he has a tube to drain excess fluid from his head. Despite over 20 surgeries to straighten and strengthen his feet and legs and to allow him to be continent, Everett still loves the hospital because he knows he has a “fan club” of providers supporting him to be healthy and active.

May 15

2015 Family Advocacy Day Hero -- Kelsey

Collins.Kelsey.jpgKelsey is an 18 year-old recent high school graduate and a patient at Dayton Children’s Hospital. For years, she has been teaching the hospital’s medical students how to best treat their patients

Apr 22

Organ Donation is Super Heroic

To continue raising awareness about pediatric organ donation, today’s testimonial comes from 16-year old Brendan, who is a heart transplant recipient.


It’s not what I am inside but what I do that defines me.
--The Batman

donate_life.jpgWho is Batman? Batman is an intelligent, strong character who can think on his feet. He fights against evil and lives by a strict moral code. I believe in the strength and courage that superheroes embody. But what defines me? I am Brendan. I just turned 16 and celebrated the 10th anniversary of my heart transplant. I am so grateful to the family who gave me a chance to live. I have strawberry blonde hair, pale skin, and I walk into rooms with a smile on my face. I love to tell jokes and make people laugh. I do the best I can. I enjoy my friends, love playing sports, but sometimes I get headaches.

 
Photos l-r: hours post heart transplant, 2005; infant, 1999; today, 2015
Apr 16

Join Us to Learn More about Kids' Health Care

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The second in this year’s three-part briefing series conducted in cooperation with the Congressional Children’s Health Care Caucus focusing on pediatric health care coverage will be happening this Friday.

Apr 15

CHIP, CHIP, Hooray!

Dee_Kids.jpgLast night with strong bipartisan support, the U.S. Senate supported a two-year extension of funding for the Children’s Health Insurance Program (CHIP). The U.S. House of Representatives passed the measure in late March, and the president is expected to sign it into law today.

Your messages to Congress helped millions of children in working families, such as Jebrill, Alyssa and Nicole, pictured here, keep their CHIP coverage and their access to quality, affordable health care.

Thanks!

Apr 15

One Family's Tragedy Could be Another's Miracle

In recognition of National Donate Life Month, Sara shares her testimonial as a mother confronted with her son’s untimely death and how he lives on today.

081511_007.JPGIt is every parent’s worst nightmare. I looked away for a few seconds and when I looked back, my six-year-old son had disappeared from the swimming pool area. At first his 14-year-old sister and I thought he was being silly and hiding from us. But after searching everywhere we could think of, someone else in the pool felt something brush against them in the pool. It was Noah. Someone there administered CPR until the ambulance took him to the closest hospital, where they restored his heartbeat. He was then transferred to Children’s Mercy Hospital in Kansas City where doctors told us that the prognosis was very poor. He never woke up. Six days later, he was pronounced brain dead.

When we were approached about organ donation, there was absolutely no hesitation: we had heard nothing but bad news about Noah’s condition and we were ready – desperate even – for some good news. Noah would donate everything he possibly could. In a situation where we felt completely powerless to save him, speaking to staff about the ways in which he could help others was the only comfort in the otherwise devastating reality of losing Noah.

Apr 10

Congress is Back in Session Next Week, What’s Next for CHIP?

capital-dome1.jpgMonday marks the return to Washington, D.C., for our Members of Congress. As the clock ticks down towards the end of funding for the Children’s Health Insurance Program (CHIP) all eyes are on Capitol Hill.

Two and a half weeks ago, the House of Representatives passed H.R. 2, the Medicare Access and CHIP Reauthorization Act of 2015, a bill which—among many other provisions—includes a two year extension of CHIP funding. We expect the Senate to consider the bill early next week when Congress is officially back in session.

Apr 06

"It's Already Done" -- A Mother's Journey

To help kick off National Autism Awareness Month, we have a first-person view from Virginia, a mother whose son has been diagnosed with ADHD and Asperger’s.


Virginia_and_son.jpgMy story did not begin with the doctor sitting me and my son’s father down and telling us our son had autism and then going through the whole denial- sad- angry-acceptance phases. It came in bits and pieces over years until he had started school and was tested. My son is what they call “high-functioning ADHD” and “Asperger’s.”

Apr 03

Autism Awareness Month -- A Mother's View

To kick off National Autism Awareness Month, Autism Speaks Georgia State Advocacy Co-Chair, Melissa Solares, shares why this month is so important to her.


Until four years ago, the month of April would come and go without much fanfare for me. I call this “the before,” which is a time when the most exciting event would be Easter dinner and the occasional egg hunt.

Then December 6, 2011 happened.

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