May 29

Family Advocacy Day Hero -- Meet Greta C.

Greta C., Age 7 Greta C.jpg
Hometown: Edina, MN
Hospital: Children’s Hospitals and Clinics of Minnesota

Greta was a typical, healthy toddler until the weekend before her third birthday when she developed croup and was rushed to the emergency department at Children’s Hospitals and Clinics of Minnesota. Despite treatment, her croup worsened overnight and she developed a secondary staph pneumonia. Within 24 hours of arriving at the hospital, her illness spiraled into multi-organ failure. 

May 28

Family Advocacy Day Hero -- Meet Amarey B.

Amarey B., Age 4 Amarey B.jpg

Hometown: West Hartford, CT

Hospital: Yale-New Haven Children’s Hospital, New Haven, CT


When meeting 4-year-old Amarey, you would never know this vibrant and energetic little girl lives with sickle cell disease. Sickle cell is a genetic disease in which the red blood cells are sickle (crescent) shaped, making it hard for them to travel through blood vessels to carry oxygen to different organs in the body. When Amarey gets sick, she experiences severe pain in her legs, arms and belly. Her hemoglobin sometimes drops, requiring a blood transfusion, and she may develop a respiratory infection, like acute chest syndrome. In addition to sickle cell disease, Amarey also battles asthma and severe allergies, which requires her to take six daily medications. 

May 27

Meet Noah B.

Starting today you will have the opportunity to meet each of the 29 All Stars who will be participating in Family Advocacy Day 2014. 

Noah B., age 4 

Hometown: Stevens Point, WI

Hospital: Children’s Hospital of Wisconsin, Milwaukee, WI

Noah is a happy 4-year-old who loves trains, planes and school. Born blue because his organs were shutting down due to heart failure, Noah was immediately taken to the neonatal intensive care unit (NICU). The family was then referred to Children’s Hospital of Wisconsin where pediatric specialists were much better equipped to help Noah.

May 21

Where’s Baby? The Dangers of Heatstroke

With Memorial Day approaching, the thoughts of many turn to family car trips and vacations. But when the weather warms, please also remember that leaving a child in a car is never safe and could lead to heatstroke. Too many Americans are not aware of this deadly problem, with potentially two million children being left alone in a car and put at risk.

May 14

Minnesota Mom Shares How Every Patient Story Matters

Speak Now for Kids is featuring a series of first person accounts from family members attending the 2014 Speak Now for Kids Family Advocacy Day, June 24 and 25. First in our series is the story of the Christiansen family whose daughter was hospitalized with croup which developed into secondary pneumonia. The family plans to meet with legislators, encouraging them to vote in favor of legislation that benefits the Children Hospital Graduate Medical Education program.

May 05

Wash Your Hands to Stay Safe and Healthy

Hand washing is an overall good practice to teach your children as they grow. However, the activity becomes even more important in the pediatric hospital and health care environment to keep child patients safe from the spread of infection and other communicable diseases.

Apr 14

Autism Diagnoses Up 30 Percent: What You Need to Know

Last month, we learned from the Centers for Disease Control and Prevention (CDC) that one in 68 children are diagnosed with autism in the United States. Even more shocking, boys are reported as almost five times more likely to receive a diagnosis of autism spectrum disorder (ASD) than girls.

Apr 07

ACA Enrollment Over; CHIP Enrollment Continues

March 31 was a big day for many health care advocates—the last day in 2014 families could sign up for coverage through the health insurance marketplaces under the Affordable Care Act (ACA). However, unlike the marketplaces, Medicaid and the Children’s Health Insurance Program (CHIP) allow children to enroll in health coverage year round.

Unfortunately, the future of CHIP coverage is uncertain beyond September 2015, when the current program will expire. If Congress fails to renew funding, many children will lose the child-specific protections in CHIP, become subject to the limited open enrollment periods through the marketplaces or lose health insurance coverage altogether.

Apr 02

House passes bill to continue to train pediatric specialists

The lynchpin in children accessing the health care they need is ensuring there are enough pediatricians and pediatric specialists who have received the highly specialized training required to successfully care for this population. In some areas, certain specialists are so scarce that it may take weeks or even months for a child to get an appointment.

Yesterday evening, the House of Representatives passed a bill that will help support the programs that train these much needed specialists. The bill, S. 1557, passed the Senate at the end of 2013 and now goes to the president for his signature to become law. The bill extends authorization for Children’s Hospitals Graduate Medical Education (CHGME) through 2018.

Apr 02

ACT to Prevent Heatstroke in Children

Few people know that heatstroke is the leading cause of non-crash, vehicle-related deaths for children. In fact, according to Safe Kids Worldwide, an average of 10 children die each day from heatstroke in a vehicle. “Young children are particularly at risk for heatstroke related injuries,” said the organization. “Their bodies heat up three to five times faster than an adult’s.” 

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