Sep 20

Children like Christian would be helped by the ACE Kids Act

When he and his parents arrived at Children's Specialized Hospital, then 9-month-old Christian had no mobility. He could not swallow, eat, or sit up, and he cried constantly. Unable to hold anything in his right hand and totally without function in his left, Christian was diagnosed with cerebral palsy, hydrocephaly and quadriplegia by 10 months.

But with his parents’ love and the hospital team’s compassionate and dedicated commitment to helping the entire family, Christian began to make progress. His feeding became less challenging and his choking reduced; he developed the skill to hold a sippy cup.

The doctors were uncertain at first how Christian would develop mentally. But at age 4, after significant testing under the direction of a neurologist, his team determined that Christian's mental development was on target for his age. With this knowledge, his family and the Children’s Specialized team continued to help him hit new milestones. 

Sep 19

What's Up Wednesday -- Michael

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. For Craniosynostosis Month, Speak Now for Kids spoke with 13-year-old Michael from Gillette Children’s Specialty Healthcare.

Michael was born with Apert syndrome, a rare genetic form of craniosynostosis that causes his bones to fuse together. At Gillette Children’s, Michael has undergone cranial-vault surgeries, hand surgeries and foot surgery; he’s also benefitted from dental services and psychological services — all coordinated in one facility. Had it not been for Gillette Children’s, Michael’s condition would be far more restrictive. But thanks to prompt interventions, Michael is living with very few limitations.

Michael has faced his medical condition head on, and has endured many procedures with a positive attitude. He has refused to let his condition slow him down!

So Michael… what’s up?

Sep 18

Children like Mackenna would be helped by the ACE Kids Act

UCLA_Mattel_Children's_Hospital_Mueller__Mackenna.jpgMackenna is a pioneer. She was born with her lung and liver fused together, a condition reported only four other times in medical history. Mackenna is the only child known to have survived! 

But she is a remarkable young lady for many reasons beyond her health condition. Mackenna is a straight A student, an accomplished pianist and a budding rock climber.

Sep 17

Craniosynostosis Awareness Month with Shelby

For Craniosynostosis Month, Speak Now for Kids spoke with Shelby about her experience growing up with craniosynostosis. Shelby is a songwriter/singer, and her original songs have topped the European charts. She has opened for the acapella group Pentatonix and Disney Channel star Sabrina Carpenter. If you just met Shelby, you would think that this talented artist has it all. But, things haven’t been easy for her.

Sep 13

Sepsis Awareness Month - It's About Time with Angelica Hales

For Sepsis Awareness Month, Speak Now for Kids spoke with Angelica Hale — America’s Got Talent Season finalist, sepsis survivor, and patient at Children’s Healthcare of Atlanta — to learn about her health journey. When she was only 4 years old, Angelica was diagnosed with sepsis after developing a bacterial infection in her lungs. Today, this talented girl is using her passion for singing to help raise awareness of the signs and symptoms of sepsis.

Although sepsis is the leading cause of children’s deaths globally, the majority of Americans have never heard the word. In the United States alone, sepsis kills more than 250,000 annually. For every hour sepsis treatment is delayed, the risk of death increases as much as 8 percent — it’s imperative that people, particularly parents, know about sepsis and its signs so that treatment can happen as quickly as possible.

Now age 11, Angelica is partnering up with Sepsis Alliance on the launch of It’s About TIME — a national initiative to create broader awareness of sepsis and the urgency in seeking treatment when there are signs and symptoms. We’re honored to have Angelica share her health journey with us and eager to learn more about the signs and symptoms of sepsis.

Aug 29

What's Up Wednesday -- Leeya

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. This week’s post will focus on 17-year-old Leeya from Le Bonheur Children’s Hospital. A fun, smart young lady, Leeya has endured multiple life-changing events since being diagnosed with a vascular anomaly that impacted her lymphatic system. Through it all, she managed to keep up her grades in school and volunteer to give back to her community.

Leeya is service-minded and a big advocate for children’s health. She was elected president of her youth group and now volunteers with the Le Bonheur Children's Hospital teen group. In a truly inspiring expression of gratitude to Le Bonheur, Leeya rallied her youth group to organize a fashion show that raised $1,200 for the hospital. There seems to be no limit to what Leeya can accomplish when she sets her mind to it.

So Leeya… what’s up?

Aug 27

Medicaid Matters for Kids Mondays - Abby

Speak Now for Kids is celebrating Medicaid’s 53rd birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Abby’s mom, Erika. Abby is a Speak Now for Kids Family Advocacy Day alum and current patient at the Wolfson Children’s Hospital.

My daughter, Abby, has Down syndrome and cerebral palsy as a result of a brain tumor that was removed when she was 9 weeks old. She cannot walk or crawl and relies heavily on us for mobility. Abby has multiple therapy sessions and medical appointments each week, which makes it hard to juggle our work schedules and maintain a good family balance.

Aug 22

What's Up Wednesday -- Alex

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. This week’s post will focus on 14-year-old Alex from Cook Children's Medical Center. Like his sister, Maddy, Alex has mitochondrial disease; he also has been diagnosed with adrenal insufficiency, immune deficiency, dysautonomia, chronic intestinal pseudo-obstruction and pancreatitis. 

Due to these serious conditions, Alex’s care is very complex and ongoing. Medicaid has been vital to ensuring Alex has access to the care he needs, and that Cook Children’s has the resources it needs to treat Alex. Even though his medical needs make some activities complicated, he still enjoys playing video games, acting, golf, violin and his church youth group. You may remember Alex from his participation in this year’s Speak Now for Kids Family Advocacy Day.

So Alex… what’s up?

Aug 20

Medicaid Matters for Kids Mondays - Maddy

Speak Now for Kids is celebrating Medicaid’s 53rd birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Maddy’s mom, Ali. Maddy is a Speak Now for Kids Family Advocacy Day alum and current patient at the Cook Children’s Medical Center.

Like her big brother, Alex, Maddy has mitochondrial disease — she also struggles with immune deficiency and disaccharide deficiency. Mitochondrial disease is a serious condition without a cure — it requires lifelong medication and therapy.

Maddy’s medical home is Cook Children’s Medical Center, she’s received extensive intervention there since an early age. Even though my daughter gets tired and struggles with pain, she wants to do the same things as other kids. Maddy's disease causes her to have fatigue, and that impacts what activities we choose to do as a family and how long we can participate in different events. Maddy has been in therapy three times a week for most of her life, she also sees nine doctors on a regular basis.

Aug 15

What's Up Wednesday -- Lucas

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. This week’s post will focus on Lucas from MUSC Children’s Hospital. You may remember Lucas from his participation in this year’s Speak Now for Kids Family Advocacy Day.

Lucas is a charismatic, energetic and intelligent 11-year-old always proud to advocate for others. When Lucas was 7 years old, he accidentally knocked a pot of boiling water onto his face and shoulder, receiving second and third degree burns. He wants lawmakers to know that children’s hospitals are not just important for families with kids born in need of serious care — they are important for everyone.

So Lucas… what’s up?

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