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?

Aug 13

Medicaid Matters for Kids Mondays - Luis

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 Crissty — Luis’ mom — to revisit Luis, a Speak Now for Kids’ Family Advocacy Day alum and current patient at Children’s Health – Children’s Medical Center Dallas.

My son was diagnosed with a rare cancer of the retina at 6 months old. I was devastated when I first heard about the conditions and the procedures that Luis has to endure at such a young age. Luckily, the cancer was caught before it had spread. But to ensure his healthy future, doctors were forced to remove the affected eye. Following the surgery, Luis underwent four rounds of chemotherapy and speech therapy.

I can’t imagine what his life would be like without Medicaid. I probably wouldn’t be able to take him to see the specialist that diagnosed him with cancer — simply because I can’t cover the cost. Our family relies on Medicaid to keep him healthy, it’s there for any special needs he might have as a cancer-survivor and also for the normal preventative checkups all kids need. As a single mother, I have to work and take care of Luis at the same time. I wouldn’t be able to afford Luis’ treatment and checkups on my own.

Aug 13

Medicaid Matters for Kids Mondays - Skylar

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 Skylar’s mom, Lindsey. Skylar is a Speak Now for Kids Family Advocacy Day alum and current patient at the Arkansas Children’s Hospital.

My daughter, Skylar, was born with a brain abnormality — this has impacted our family in many ways. She requires 24-hour care and assistance for all of her daily activities. She also needs a wheelchair and this heavily restricts where we go and what we do on a daily basis. She has multiple doctor appointments a month, and she still needs medical treatments at home when she’s not at the hospital.

Skylar is on 10-12 medications a day, and also requires respiration treatments, oxygen and feeding tubes, mobility equipment and more. Even though my husband and I have full-time jobs, we still can’t afford the care and equipment that Skylar needs with our private insurance alone.

Aug 08

What's Up Wednesday -- Ava

#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 15-year-old Ava.

You may remember Ava from her participation in this year’s Speak Now for Kids Family Advocacy Day. For those who know the happy and confident 15-year-old, it may come as a surprise that she was once a short-tempered little girl. Ava was suffering through headaches nearly every day of her life and occasional nausea. At age 8, Ava was diagnosed with juvenile pilocytic astrocytoma, a rare, often benign, brain tumor that strikes in childhood.

Today, while Ava is headache-free, she continues to work on her mobility and processing speed with the help of Mt. Washington Pediatric Hospital’s staff of physical therapists, occupational therapists and child life therapists (the final being her favorite because they usually play music and sing with her during therapy).

So Ava… what’s up?

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