#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. For Sickle Cell Awareness Month, Speak Now for Kids spoke with 10 year-old Zion from Seattle Children’s about why she wants to advocate for kids like her siblings.
Zion lives right in the middle of an older brother and little sister who both have sickle cell disease (SCD). SCD has certainly made life different, and sometimes difficult, for Zion and her entire family, but dealing with this chronic condition has also brought the family closer and made them stronger.
This young advocate traveled to the nation’s capital for Family Advocacy Day to tell her members of Congress that sickle cell disease is very difficult to manage.
So Zion… what’s up?
For Sickle Cell Awareness Month, Speak Now for Kids spoke with Danielle, Olivia’s mom, to learn about the signs and symptoms of Sickle Cell Disease (SCD). If you saw how active Olivia is in her community, you would never guess that she also has SCD and fights through pain, fatigue and swollen limbs every day. Olivia faced SCD head on at Ann & Robert H. Lurie Children’s Hospital of Chicago and endured her condition with a positive attitude.
My daughter was diagnosed with SCD at the delicate age of just 7 days old. By 5 months, Olivia had endured painful dactylitis (inflammation of the fingers) and frequent colds due to SCD’s compromise on the immune system. At age 6, Olivia had a splenectomy, which weakened her immune system even more.
After Olivia’s splenectomy, she wanted to know if she was the only person in our town with SCD. She wondered if there were other children like her that had gone through the same trials she had. For her 7th birthday, instead of asking for a gift, this special little girl asked if she could give a party to all children living with SCD. And so, the Olivia’s South Suburban Sickle Cell Awareness Party & Blood Drive began in the fall of 2017.
Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week, we spoke to Noah’s mom, Kristina. Noah is a Speak Now for Kids Family Advocacy Day alum and current patient at Boston Children’s Hospital.
My son, Noah, was born with a rare heart defect called hypoplastic left heart syndrome (HLHS). Noah is essentially missing the left side of his heart, so the right side of his heart pumps blood to both his lungs and body. Since there is no cure for congenital heart defects, treatment for children with HLHS is considered palliative and not curative. Noah had his first open-heart surgery when he was just 3 days old at Boston Children’s Hospital. Noah needed another heart surgery when he was 4 months old, and he will require a third surgery next summer.
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.
#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?
Mackenna 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.
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.
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.
#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?
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.