May 09

Meet Anthony: 2022 Family Advocacy Day Champion

Anthony is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Anthony and his family will discuss his health journey, Children’s Specialized Hospital’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Anthony.

At 18 months, Anthony had around 10 words in his vocabulary, but others just weren’t coming. His mother, Yaqeulin, noticed things weren’t developing like they should be. When Yaquelin reached out to Anthony’s pediatrician, there weren’t a ton of answers, so she did some additional research. 

May 05

Meet Eliana: 2022 Family Advocacy Day Champion

Eliana is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Eliana and her family will discuss her health journey, UH Rainbow Babies & Children Hospital’s role in providing her with necessary health care services, and why the public and our elected officials must invest in the future of patients like Eliana.

In December 2020, 14-year-old Eliana and her family contracted COVID-19. Eliana had minor symptoms but seemed to recover. However, 10 months later in October 2021, her COVID symptoms reoccurred - and this time were severe. Eliana was taken by ambulance to the emergency department—first to University Hospitals Elyria Medical Center, then to UH Rainbow Babies & Children’s Hospital, where she was hospitalized for 8 days.

Apr 25

Medicaid Matters for Kids: Senya's Story

We were honored to have Senya join us for Family Advocacy Week in 2021, and recently reached out to mom Theresa for an update as part of our Medicaid Matters for Kids Series.

During Theresa’s pregnancy, doctors were closely monitoring Senya's growth as they had noticed abnormalities during an ultrasound. He was born premature at 33 weeks.

At four months old Senya was diagnosed with microvillus inclusion disease, a rare genetic disease of the intestine that causes severe diarrhea and an inability to absorb nutrients. He was also diagnosed with cholestasis, a condition in which the flow of bile from the liver is reduced or blocked.

Mar 21

Medicaid Matters for Kids: Meet Kevin

We were honored to have Kevin join us for Family Advocacy Week in 2021 and recently reached out to mom Autum for an update as part of our Medicaid Matters for Kids Series.

At Kevin’s six-month appointment with his pediatrician, there were a few milestones he hadn't quite met, but the doctors said they would reassess at nine-months-old. However, before that appointment Kevin was accidentally dropped at daycare and a skull fracture sent him to the ER.

Mar 15

Meet the Child Life Specialists at McLane Children's Hospital

This Child Life Month, we're recognizing Tina Ulanowski, Child Life Manager, and the team at McLane Children’s Hospital in Temple, TX.

Tina has been a child life specialist for 35 years and has been working at McLane Children’s Hospital for the last year and a half.

Mar 07

Child Life Specialists are Exceptional!

March is Child Life Month and Speak Now for Kids is proud to celebrate Crawford Daniel, a certified child life specialist II who has been with Children’s Alabama, Birmingham for four and a half years.

“I always knew that I wanted a career that would allow me to help other people, specifically children,” says Crawford.

Feb 28

Speak Now For Kids’ Family Advocacy Day

Advocacy is a powerful way for kids and their families to get involved and make a difference for children’s health and children’s hospitals across the nation, especially when they’ve experienced firsthand the quality and necessary care children’s hospitals provide.

To encourage past and current pediatric patients to share their stories of how children’s hospitals have positively impacted their health care journey, Speak Now For Kids hosts an annual Family Advocacy Day.

Feb 22

Meet Isabel

February is Pediatric Cancer Awareness Month. Isabel, a patient at Children’s National was diagnosed and treated for Burkitt Lymphoma - a rare and extremely aggressive form of non-Hodgkin lymphoma.

Now cancer free, Isabel’s family shares her heroic story to give inspiration to others and to raise awareness about Burkitt Lymphoma.

Read Isabel’s full story.

Feb 16

Heart Month with Charlie

February is Pediatric Heart Month. Charlie, a patient at C.S. Mott Children’s Hospital, was diagnosed with a serious heart defect just days after birth. Now 4 years old, Charlie and his family share his story to raise awareness about congenital heart disease.

Read Charlie's full story in WTOL.

Jul 29

Family Advocacy Week 2021: “We’re Stronger Together"

This year, 50 patient families from 39 children’s hospitals in 21 states gathered virtually to participate in the Speak Now for Kids Family Advocacy Week to advocate for children’s health care. The past year and a half have been challenging due to the COVID-19 pandemic and these families showed resilience and courage as they gathered to share personal stories on what strength looks like and means to them. By coming together to share their stories, they spoke and acted locally, while having an impact nationally.

Families met with their congressional leaders to advocate for better child mental health services and investments in children’s health and health care delivery. They asked their lawmakers to strengthen the pediatric safety net for all children, invest in the training of tomorrow’s pediatricians and pediatric specialists and support legislation like the Accelerating Kids Access to Care Act, which improves cross-state access to care for children covered by Medicaid.

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