Feb 19

Lucas's Story

Our son, Lucas, was born with a complex congenital heart defect called hypoplastic left heart syndrome (HLHS) in 2007. At that time my husband and I were both employed full-time and both had full medical coverage, but we were faced with the challenge that one of us would have to be his full-time caregiver at home due to his complex medical condition.

Feb 12

Caleb's Story




In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today we will hear from Leslie Sams, mother to Caleb. Special thanks to Conquering CHD for submitting Caleb's story.

Feb 07

Supporting pregnant women and kids’ oral health during National Children’s Dental Health Month

February marks Children’s Dental Health Month. Did you know that tooth decay remains the most common chronic condition of childhood, ahead of asthma and obesity? The impact of this condition — caused by the disease known as “caries” — goes far beyond a cavity. Dental caries can hurt a child’s ability to eat, sleep, and learn. If left untreated, it can set the stage for a lifetime of problems. Fortunately, early prevention can mitigate these harms, and children’s health advocates can champion such efforts even before our children are born.

While often an overlooked aspect of prenatal care, we can help prevent childhood tooth decay by supporting and improving pregnant women’s oral health. Research shows that a mother’s oral health is a good predictor of her child’s oral health. Kids are three times more likely to experience cavities if their moms have high levels of untreated tooth decay.

Feb 05

Trenton's Story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today we will hear from Andrea Baer, Director of Patient Advocacy for Mended Little Hearts and mom to Trenton.

Our son, Trenton was born on St. Patrick’s Day in 2009. A mere Six hours later we were given the devastating news that Trenton had a congenital heart defect and Down syndrome. He would need open heart surgery to survive. The next few months were full of learning a new language of heart defects, a new way of life in caring for a child with complex critical needs, and finding out how incredibly important it is to have access to health care.

Jan 24


shutterstock_412021486.jpgEarlier this week, President Trump signed into law a six-year extension of the Children’s Health Insurance Program (CHIP). This extension will ensure access to a range of pediatric services — from preventative visits to life-saving treatments — for millions of children in working families.

With over 22,000 messages sent to Congress regarding the extension, the importance of CHIP to the millions of children and their families was heard loud and clear. Thanks to your unrelenting, yet patient outreach, American children will continue to have access to secure and affordable health care.

Visit our Issues page to learn more about the importance of comprehensive health care for children.

Jan 17

Playing New Tunes

Joshua was born with a very rare skeletal dysplasia called Atelosteogenesis III (AO3), a connective tissue disorder which affects the development of bones, cartilage, joints, tissues and tendons.

Jan 03

Family members with disabilities are awesome!

Tamara and Matthew wanted to keep their pregnancy a secret until they could make the happy announcement to their family in-person over the 2016 Thanksgiving holiday. As an additional surprise, they wanted to share the gender of the baby at the same time.

So at 10 weeks gestation, they had genetic testing to reveal the baby’s gender. While testing revealed the baby was a boy, it also indicated the baby was high-risk for Down syndrome.

Dec 06

‘Tis the Season to Fund CHIP


“The CHIP Program Is Beloved. Why Is Its Funding in Danger?” New York Times Editorial Board 12/5/2017

While the U.S. Senate has been focused on tax reform, they turned a blind eye toward millions of kids who are at risk of losing their health coverage soon. It’s been more than two months since funding for the Children’s Health Insurance Program (CHIP) expired.

This winter, many U.S. states will run short on money for continuing health coverage for these low-income children in working families. Senators must not leave kids and their families out in the cold this holiday season!

Nov 20

Meet Emmitt

Two-year old Emmitt Elijah Sky McMurry got off to a rocky start. While he was in utero he was positioned head up ―or breach― instead of head down. As a result, his hips were unable to develop correctly, and he was born with hip dysplasia― an unstable joint dislocation where the upper leg bone does not sit properly in the hip socket.

In an effort to treat the dysplasia, Karl E. Rathjen, M.D., Emmitt’s doctor at Texas Scottish Rite Hospital for Children first placed Emmitt in a detachable brace, however the family was soon told that surgery was inevitable. In preparation for the procedure, Emmitt’s legs were wrapped and stretched. This photo was taken at one of the pre-op stretch sessions.

Nov 19

Type 2 diabetes in children and adolescents

To help recognize National Diabetes Month, Maureen Dever, MSN, CRNP, CDE, PPCNP-BC, nurse practitioner in the Diabetes Center at Children's Hospital of Philadelphia, is here to talk about the growing issue of type 2 diabetes in children and teens.

Type 2 diabetes is occurring more often in children and teens.

Here are some facts about this disease.

What is diabetes?

Diabetes is a chronic disease, which affects the way the body processes blood sugar. There are two main types of diabetes, type 1, which is an autoimmune disease (the immune system attacks the beta cells of the pancreas) and type 2, which does not have an autoimmune component.

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