Oct 15

Medicaid Matters for Kids Mondays - Evan

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 with Evan’s mom, Tara. Evan was diagnosed at Children’s Hospital Colorado at 18 months with Polymicrogyria (PMG) — a condition characterized by abnormal development of the brain before birth.

PMG causes many impairments, including paralysis of the facial muscles, developmental delays, cognitive issues and cerebral palsy. Additionally, up to 85 percent of PMG patients experience varying degrees of seizures. Unfortunately, there is no cure for PMG, but it is possible to minimize the impact of the disorder through therapy.

My son, Evan, has always had a very aggressive home and school therapy schedule, and this is why he’s doing as well as he is today. Before starting therapy, Evan didn’t recognize that he had a left side to his body, and he could barely sit up. He cannot speak and relies on sign language and other augmentative communication devices.

Oct 11

Physical Therapy Month with Emmitt

October is National Physical Therapy Month, and we invite you to read about our amazing little patients who have benefited from physical therapy services at our children’s hospitals. Today’s blog is about Emmitt from Texas Scottish Rite Hospital for Children!

Three-year old Emmitt got off to a rocky start. While he was in the utero he was positioned head up ―or breach― instead of head down. As a result, his hips were unable to develop correctly, and he was born with hip dysplasia― an unstable joint dislocation where the upper leg bone does not sit properly in the hip socket.

In an effort to treat the dysplasia, Dr. Rathjen first placed Emmitt in a detachable brace, however the family was soon told that surgery was inevitable. In preparation for the procedure, Emmitt’s legs were wrapped and stretched. This photo was taken at one of the pre-op stretch sessions.

Oct 08

Medicaid Matters for Kids Mondays - Lucy

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 with Lucy’s mom, Lisa. Lucy is a Speak now for Kids Family Advocacy Day alum and current patient at St. Joseph’s Children’s Hospital.

My daughter, Lucy, is the only person living in the United States with a diagnosis of EMARDD, or early onset myopathy with areflexia, respiratory distress and dysphagia. Her medical condition has prevented us from doing many things some families may take for granted, such as traveling, bouncy houses and riding a bike. Lucy needs nursing care 24 hours a day, seven days a week. She also sees nine specialists and receives six therapies a week, including occupational therapy, physical therapy and speech. I had to leave my job to make sure Lucy had the care she needed. My husband and I have trouble planning anything for ourselves because a nurse may call out. We are always worried about the safety of our daughter.

We would only have our private insurance if Lucy did not have Medicaid. However, our private insurance maxes out at a certain dollar amount for medical supplies and equipment, which means her life support equipment is not fully covered without Medicaid. Medicaid also covers private duty nursing which takes care of her medical needs. Lucy receive her therapies and medical equipment through Medicaid. Ultimately, she lives and thrives because of the services we receive from Medicaid. Without this program, Lucy’s survival rate would decrease significantly.

Oct 04

Physical Therapy Month with Josh

October is National Physical Therapy Month, and we invite you to read about our amazing little patients who have benefited from physical therapy services at our children’s hospitals. Today’s blog is about Josh from Nemours Alfred I. duPont Hospital for Children!

Josh was born with a very rare skeletal dysplasia called Atelosteogenesis III (AO3), a connective tissue disorder which affects the development of bones, cartilage, joints, tissues and tendons. He has an underdeveloped rib cage that affects the development and functioning of the lungs.

Josh’s spinal cord was also at risk of becoming severed. At 20-months-old, he underwent a life-saving, 12-hour surgery at Nemours Children’s where orthopedic specialists repaired his severe cervical kyphosis—curvature of the neck. Over the next several years, he underwent multiple surgeries to repair a cleft palate, leg and feet realignment and more recently a spinal fusion to correct his scoliosis. 

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

Sickle Cell Awareness Month with Olivia

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.

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 Danielle share her daughter’s health journey with us and eager to learn more about the signs and symptoms of SCD.

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.

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