Oct 01

Children like Benjamin would be helped by the ACE Kids Act

12-year-old Benjamin has been a fighter since the day he was born. From crashing at birth to where he is today, this boy has had a tremendous battle against the odds.

His parents did not know he had Down syndrome until tests confirmed it when he was just four days old. After a year of being in and out of the hospital due to his failure to thrive, Benjamin was diagnosed with Achondroplasia, also known as dwarfism. He has undergone eight brain surgeries, multiple airway and stomach surgeries, and just recently recovered from surgery on both his legs. However, despite the numerous surgeries and procedures at Akron Children’s Hospital, Benjamin has been a “warrior” through it all.

Sep 29

Childhood Cancer Awareness Month with Sofia

For Childhood Cancer Awareness Month, Speak Now for Kids spoke with Sofia's mom, Cat. Sofia is kind, loving and thoughtful, but she’s also strong and fierce. What began as an unexplained lingering black eye on 2-year-old Sofia quickly turned into shock and disbelief. When an ophthalmologist recommended a CT scan, her parents wanted to speed up the process and sent Sofia the ER at John’s Hopkins All Children’s Hospital.

“It was so fast. We found out that day that Sofia had stage 4 high-risk neuroblastoma,” Cat recalls, shaking her head at the memory. “The team at Johns Hopkin’s All Children’s performed an MRI and a bone marrow test. The news was not good. The primary tumor which began in Sofia’s abdomen spread to her eye and her chin. The cancer was also all over her bone marrow.” What 2-year-old Sofia faced next would be daunting.

Sep 28

Sickle Cell Awareness Month with Cora

For Sickle Cell Disease Awareness Month, Speak Now for Kids spoke with Cora’s mom, Dorina, about her daughter’s experience with sickle cell disease (SCD). At just one week, Cora was diagnosed with sickle cell disease and has been treated at Children’s National Health System since she was one month old.

SCD is an inherited blood disorder that affects red blood cells, resulting in anemia and severe pain. Even though this disease isn’t widely talked-about, approximately 70,000 to 100,000 Americans have SCD. We’re honored to have Dorina share her daughter’s health journey with us and eager to learn more about the signs and symptoms of SCD.

Sep 27

Sickle Cell Awareness Month with Chey

For Sickle Cell Awareness month, Speak Now for Kids spoke with Shannon, Chey’s mom, to learn about the signs and symptoms of Sickle Cell Disease (SCD). Chey faced SCD head on at Children’s National Health System and endured her condition with a positive attitude. She refused to let it stop her from getting good grades and participating in church and sports.

SCD is an inherited blood disorder that affects red blood cells, resulting in anemia and severe pain. Even though this disease isn’t widely talked-about, approximately 70,000 to 100,000 Americans have SCD. We’re honored to have Shannon share her daughter’s health journey with us and eager to learn more about the signs and symptoms of SCD.

Sep 26

What's Up Wednesday -- Zion

#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?

Sep 25

FAD Alum Newsletter -- Alumni Life Changes

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. 

Sep 24

Medicaid Matters for Kids Mondays - Noah

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.

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.

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