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.

Jun 17

Meet Itzayana 2021 Family Advocacy Week Champion

Itzayana is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Itzayana and her family will discuss her health journey, CHOC Children’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 Itzayana.

Itzayana was 3 months old when she was diagnosed with hypomyelination, an abnormally low amount of myelination that affects the nervous system, and leukodystrophy type 14, a neurodevelopmental disorder leading to decreased muscle tone and diminished motor or cognitive skills. Itzayana also has seizures and severe respiratory problems.

Jun 15

Meet Sebastian: 2021 Family Advocacy Week Champion

Sebastian is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Sebastian and his family will discuss his health journey, Nemours Children's Health System’s role in providing Sebastian with necessary health care services, and why the public and our elected officials must invest in the future of patients like him.

On Mother’s Day in 2020, Sebastian’s parents brought him to the emergency room at Nemours Children’s Health System. A CAT scan determined that Sebastian had a brain tumor, and he was immediately admitted to the PICU.

Jun 14

Meet Madeline: 2021 Family Advocacy Week Champion

Madeline is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Madeline and her family will discuss her health journey, Connecticut Children’s Medical Center’s role in providing Madeline with necessary health care services, and why the public and our elected officials must invest in the future of patients like Madeline.

When Madeline was 13 years old, she woke up one morning with rashes all over her body. The rashes came and went for a few days, along with extremely high fevers and intense pain.

Jun 13

Meet Rachael: 2021 Family Advocacy Week Champion

Rachael is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Rachael and her family will discuss her health journey, Lucile Packard Children's Hospital Stanford’s role in providing Rachael with necessary health care services, and why the public and our elected officials must invest in the future of patients like Rachael.

Rachael was born with Down syndrome, then at 11 years old, she was diagnosed with acute lymphoblastic leukemia.

Jun 12

Meet Gabe: 2021 Family Advocacy Week Champion

Gabe is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Gabe and his family will discuss his health journey, Children’s Hospital of Michigan’s role in providing Gabe with necessary health care services, and why the public and our elected officials must invest in the future of patients like Gabe.

Gabe’s parents noticed he was not walking. After an appointment at Children’s Hospital of Michigan, Doctors recommended a physical therapy evaluation to find out more. Additional testing diagnosed Gabe with spastic cerebral palsy.

Jun 11

Meet Dalian: 2021 Family Advocacy Week Champion

Dalian is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Dalian and his family will discuss his health journey, Ann & Robert H. Lurie Children's Hospital of Chicago’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 Dalian.

Around nine months old, Dalian stopped breathing and from that moment on he’s required medical attention around the clock.

Jun 10

Meet Lainey: 2021 Family Advocacy Week Champion

Lainey is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Lainey and her family will discuss her health journey, Dayton Children’s 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 Lainey.

As a 10-year-old, Lainey was diagnosed with reactive attachment disorder (RAD), PTSD and anxiety. 

Jun 10

Meet Declan: 2021 Family Advocacy Week Champion

Declan is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Declan and his family will discuss his health journey, Cleveland Clinic Children’s 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 Declan.

At birth, Declan was not able to be extubated while in the NICU, so his parents approved a tracheotomy and g-tube placement when he was 8 weeks old.

Jun 09

Meet A’Zyriah: 2021 Family Advocacy Week Champion

A’Zyriah is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, A’Zyriah and her family will discuss her health journey,  Children’s Health Children’s Medical Center Dallas’ 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 A’Zyriah.

As a 5-year-old, A’Zyriah was running around and playing, but some days she was just moving slow and didn't seem like herself. Then, her mother noticed A’Zyriah’s stomach was swollen, and she had purple and blue spots on her body.

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