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.

Mar 31

A Successful Medicaid Matters for Kids Month

Throughout March, Speak Now for Kids celebrated Medicaid Matters for Kids Month. Thank you to everyone who read, commented on, and shared the stories we posted.

While it’s hard to choose among favorites, we believe the four stories below effectively capture how Medicaid and CHIP help children and their families.

Mar 29

Medicaid Matters for Kids Month -- Lily H's Story

Throughout the month of March, Speak Now for Kids is celebrating Medicaid Matters for Kids Month with posts highlighting the importance of Medicaid in children’s access to health care.


Lily’s mother, Adele, doesn't like to think about what life would be like without assistance from Medicaid for her 9-year-old daughter’s medical expenses. “I honestly don’t know where we would be without it,” she says. “Would we be homeless? Would Lily be able to receive the care she needs? Medicaid has truly been a lifesaver for our family.”

Mar 27

Medicaid Matters for Kids Month -- Osvaldo's Story

Throughout the month of March, Speak Now for Kids is celebrating Medicaid Matters for Kids Month with posts highlighting the importance of Medicaid in children’s access to health care.

Osvaldo.pic.2.jpgWe first met Osvaldo, then a smart, creative 7-year-old, during the 2013 Speak Now for Kids Family Advocacy Day. At 10 months old Osvaldo was diagnosed with spastic quadriplegia cerebral palsy, a severe form of cerebral palsy that affects muscles in his core and in all four limbs.

Mar 25

Medicaid Matters for Kids Month -- Antonio's Story

Throughout the month of March, Speak Now for Kids is celebrating Medicaid Matters for Kids Month with posts highlighting the importance of Medicaid in children’s access to health care.

AntonioReider_CHA_Fb_Feb._2015_2_.jpgAntonio first came to our attention as a participant of Speak Now for Kids’ Family Advocacy Day. When he was only 6, Antonio was diagnosed with severe aplastic anemia, a condition where his immune system attacks his bone marrow. Antonio immediately began intensive immune suppression treatment. Over the next few months, his blood counts only improved slightly, and it was clear the family needed to start preparations for a bone marrow transplant.

Mar 23

Medicaid Matters for Kids Month -- Kara's Story

Throughout the month of March, Speak Now for Kids is celebrating Medicaid Matters for Kids Month with posts highlighting the importance of Medicaid in children’s access to health care.

kara.jpgWe first met 17-year-old Kara when she attended last year’s Family Advocacy Day with her family. Born by an emergency Caesarian section after her fetal heart rate dropped, she spent the first 2 months of her life in the hospital. During that time, Kara, who was diagnosed with severe cerebral palsy, also had to recover from immediate onset of seizures at birth due to an 80 percent blood loss, as well as kidney failure.

Mar 21

Medicaid Matters for Kids Month -- A Mom's View

Throughout the month of March, Speak Now for Kids is celebrating Medicaid Matters for Kids Month with posts highlighting the importance of Medicaid in children’s access to health care.

Today’s post was written by Deirdre, a mother of 4.


Unexpectedly Uninsured

Dee_Kids.jpgCaring for a child with special health needs was nothing new for me. I adopted Armere 22 years ago from a pediatric nursing home. He was born at 26 weeks gestation and was dependent on a ventilator to breathe. At the time I was single and working at Children’s Specialized Hospital while going to nursing school part time. I married my husband in 2001 and our family grew when we adopted another son, Jebrill, who is on the autism spectrum. Three short years later we welcomed our first biological daughter, Alyssa; 11 months later we welcomed a second daughter, Nicole. Having two girls so close in age, it was clear that Alyssa’s speech was delayed and her muscle tone low when compared to her younger sister. With two more children, we continued to rely heavily on our health insurance for specialty pediatric services, including frequent therapy visits, doctor visits and several prescription medications.

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