Oct 10

Medicaid Matters for Kids: Charlie’s Story

We were honored to have Charlie join us for Family Advocacy Day in 2022. Through this event, Charlie and his family discussed his health journey, and why Medicaid Matters in his healthcare.

Charlie was born at Highland Park Hospital in Chicago. At just six days old, during his first pediatric check-up, doctors discovered he was hypothermic. He was sent to the ER where a spinal tap revealed he had sepsis and suspected bacterial meningitis. He spent the next 30 days in the hospital.

Sep 26

Medicaid Matters for Kids: Harrison’s Story

We were honored to have Harrison join us for Family Advocacy Week in 2022. Through this event, Harrison and his family discussed his health journey, and why Medicaid Matters in his healthcare.

Harrison was born with hypoxic ischemic encephalopathy, a type of brain dysfunction that occurs when the brain doesn’t receive enough oxygen or blood flow for a period of time. Then, when he was 2 years old, he was diagnosed with quadriplegic cerebral palsy. Harrison also has dystonia – a movement disorder where his muscles contract involuntarily.

Sep 12

Medicaid Matters for Kids: Eddie’s Story

We were honored to have Eddie join us for Family Advocacy Week in 2022. Through this event, Eddie and his family discussed his health journey, and why Medicaid Matters in his healthcare. 

Eddie was born premature at 23 weeks and weighed one and half pounds. Doctors diagnosed him with bronchopulmonary dysplasia, a form of chronic lung disease that can be common in low birth weight and premature infants.

Aug 29

Medicaid Matters for Kids: Melanie’s Story

We were honored to have Melanie join us for Family Advocacy Week in 2022. Through this event, Melanie and her family discussed her health journey, and why Medicaid Matters in her healthcare. 

When Melanie was 14 years old, she discovered a large mass on the left side of her neck. Her parents took her to see her pediatrician to run some tests and she was diagnosed with mononucleosis. However, six months later when the lump on her neck was still there, Melanie’s parents took her to a local hospital for a CT scan and they were referred to Connecticut Children's Medical Center.

Aug 15

Medicaid Matters for Kids: Paisley’s Story

We were honored to have Paisley join us for Family Advocacy Day in 2022. Through this event, Paisley and her family discussed her health journey, and why Medicaid Matters in her healthcare.

Following the 20-week anatomy scan, doctors were concerned about signs of abnormalities with Paisley. After Paisley was born with a cleft pallet, she remained in the NICU where she was diagnosed with dwarfism and Schwartz-Jampel syndrome, a rare condition characterized by permanent muscle stiffness and bone abnormalities.

Aug 01

Medicaid Matters for Kids: Ella’s Story

We were honored to have Ella join us for Family Advocacy Day in 2022. Through this event, Ella and her family discussed her health journey, and why Medicaid Matters in her healthcare.

When Ella was two years old, she was diagnosed with a stage 4, high-risk neuroblastoma. Neuroblastoma is a solid cancer of the nerve tissue of the sympathetic nervous system and stage 4 meant that Ella’s cancer had spread to other parts of her body.

Jul 25

Medicaid Matters for Kids: Anthony’s Story

We were honored to have Anthony join us for Family Advocacy Week in 2022. Through this event, Anthony and his family discussed his health journey, and why Medicaid Matters in his healthcare.

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. 

Jul 01

Family Advocacy Day 2022: “Virtually Unstoppable”

As thousands of children and teenagers are suffering from mental health conditions exacerbated by the COVID-19 pandemic, and families are navigating care for other complex and rare diseases, it has never been more important to advocate for policies that would strengthen kids’ health.

On June 12 to 14, 2022, Children’s Hospital Association’s Speak Now For Kids gathered nearly 50 patient families from over 30 children’s hospitals in 17 states to participate in its annual Family Advocacy Day to share their virtually unstoppable stories with federal lawmakers.

Jun 27

Medicaid Matters for Kids: Hailey's Story

We were honored to have Hailey join us for Family Advocacy Week in 2019. We recently reached out to her grandmother, Dawn for an update as part of our Medicaid Matters for Kids Series.

Twelve years ago, Hailey had an unthinkable accident—she fell in the bathtub and broke her neck. This injury was the result of fused vertebrae in her neck, which had been present at birth, but had not previously been noticed by her family or pediatrician. 

Jun 14

Meet Michael: 2022 Family Advocacy Day Champion

Michael is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Michael and his family will discuss his health journey, Gillette Children's Specialty Healthcare’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 Michael.

Michael’s parents knew there would be complications at birth. He was born at 26 weeks gestation and suffered a grade 3 hemorrhage the day after he was born.

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