Jul 12

Meet Liam and Emma: 2020 Family Advocacy Week Champions

Liam and Emma are participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Liam, Emma and their family will share information about their health journey, Wolfson Children’s Hospital’s role in providing Liam and Emma with necessary health care services, and why the public and our elected officials must invest in the future of kids like Liam and Emma.

Liam was 2 years old when he was diagnosed with acute lymphoblastic leukemia. The doctors at Wolfson Children’s Hospital in Jacksonville, Florida, immediately started him on chemotherapy, and he received his port the next day.

For the next three years, Liam moved through his treatment according to plan. However, it was a scary time for the family especially Lacey, Liam’s mother, who was pregnant with twins.

Jul 11

Meet Jack: 2020 Family Advocacy Week Champion

Jack is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Jack and his family will share information about his health journey, Joe DiMaggio Children’s Hospital’s role in providing Jack with necessary health care services, and why the public and our elected officials must invest in the future of kids like Jack. ]

Jul 10

Meet Halle: 2020 Family Advocacy Week Champion

Halle is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Halle and her family will share information about her health journey, Prisma Health Children's Hospital–Upstate’s role in providing Halle with necessary health care services, and why the public and our elected officials must invest in the future of kids like Halle.

Jul 09

Meet Jackson: 2020 Family Advocacy Week Champion

Jackson is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020.

Through this special event, Jackson and his family will share information about his health journey, John R. Oishei Children’s Hospital’s role in providing Jackson with necessary health care services, and why the public and our elected officials must invest in the future of kids like Jackson.

Jul 08

Meet Teeba: 2020 Family Advocacy Week Champion

Teeba is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Teeba and her family will share information about her health journey, University Hospitals Rainbow Babies & Children's Hospital’s role in providing Teeba with necessary health care services, and why the public and our elected officials must invest in the future of kids like Teeba.

Teeba, an Iraqi citizen, was just 19 months old when an IED explosion left her severely burned with major damage and scarring to her face, neck, and hands.

Jul 07

Meet Cassidy: 2020 Family Advocacy Week Champion

Cassidy is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020.

Through this special event, Cassidy and her family will share information about her health journey, Nemours Children's Hospital’s role in providing Cassidy with necessary health care services, and why the public and our elected officials must invest in the future of kids like Cassidy. 

Cassidy’s health started out unsteady from the beginning. Suffering a cardiac arrest at birth, doctors worked quickly to stabilize her, but health concerns continued. At nearly 3 months old, Cassidy was diagnosed with congenital central hypoventilation syndrome (CCHS)—a disorder that affects the respiratory system.

“When I learned that my little girl would need a tracheostomy tube and a ventilator to help her breathe I was devastated and overwhelmed,” says Marne, Cassidy’s mother. 

Jul 02

Meet Zachary: 2020 Family Advocacy Week Champion

Zachary is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020.

Through this very special event, Zachary and his family will share information about his unique health journey, Michigan Medicine C.S. Mott Children's Hospital’s role in providing Zachary with necessary health care services, and why the public and our elected officials must invest in the future of kids like Zachary.

If you met Zachary today and saw his amazing smile, you would never know at one point he was given less than a 5% chance at life.

Jun 25

Update on Jakob

JakobUpdate1.PNGJakob was born with an extremely rare genetic disease called microvillus inclusion disease—essentially, his intestines fail to absorb nutrients. 

At 2019 Speak Now for Kids Family Advocacy Day, Jakob and his family advocated on behalf of kids like him and the care he receives from C.S. Mott Children's Hospital

Below is an update from his mom.

Fortunately, Jakob hasn't had major medical issues develop this year! We continue to have a combination of private insurance and Medicaid to cover his health care needs.

Jun 19

Living with Sickle Cell Disease

While June 19 is World Sickle Cell Day, Capri lives with sickle cell disease (SCD) every day. In 2016, she advocated for youth like her by representing Levine Children’s Hospital at Speak Now for Kids Family Advocacy Day. Below is an update from Capri.

Capri-1.jpgIn 2017, I graduated high school and went to college at North Carolina Agricultural and Technical State University to study nursing. I’m currently a rising senior and have had so many great experiences in college. My passion for nursing has grown tremendously as I matriculate through my program. I’ve maintained my honors status in college, so I guess I can say I have excelled. I was recently elected as president of the nursing student association chapter at my school, and I look forward to serving the nursing community this fall.

Sickle cell disease predominantly affects minorities. I feel it’s not highlighted as much as it should be to the world. While I feel more people are aware of SCD, there is always room for improvement.

Jun 15

Celebrating Gerard’s Life

GerardSeniorPic.jpgOur community of child health advocates celebrates the life of Gerard, an ambassador who participated at 2016 Speak Now for Kids Family Advocacy Day. Gerard joined three other teenage patients representing Levine Children’s Hospital to work the halls of Capitol Hill in Washington, D.C. 

It is with a heavy heart we share the news of Gerard’s passing after a lengthy illness. Below is a tribute to Gerard’s life and his incredible impact on others.

Gerard, an advocate for those like him with sickle cell disease (SCD), was dedicated toward increasing awareness about SCD and ensuring children’s hospitals considered the needs of teens. He received excellent care at Levine Children’s Hospital.

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