Dec 11

Children like Grace would be helped by the ACE Kids Act

Grace, 10 years old, is a strong-willed and determined fighter. She needed those traits to battle acute myeloid leukemia, a type of cancer that affects the blood and bone marrow.

Grace was admitted to Children’s Hospital and Medical Center almost two years ago, and it quickly became home for her and her family. The hospital team provided coordinated care to save Grace from this toxic and life-threatening disease. Grace not only received chemotherapy as an oncology patient, she also worked with the teachers at Children’s to stay on top of her education.

“There is no way that any family, regardless of their income, could afford to have a child in the hospital long-term,” her mom says. Grace relies on Medicaid to access treatments and drugs that her primary plan didn’t cover. This is why Grace and her family represented Children’s on Capitol Hill in October to share information about her health journey and the importance of Medicaid with members of Congress.

Nov 28

Diabetes Awareness Month with Samson

Speak Now for Kids is celebrating Diabetes Awareness Month in November to raise awareness about diabetes risk factors and encourage people to make healthy changes. This week, we spoke with Sarah about her experience of parenting son, Samson, who was diagnosed with type 1 diabetes.

About 30.3 million people in the United States have diabetes — it is one of the leading causes of disability and death. Yet, one in four people with diabetes don’t know they have the disease. Diabetes can cause blindness, nerve damage, kidney disease and other health problems if not controlled. But thankfully, people with diabetes can properly manage the disease by living a healthy lifestyle. 

My son, Samson, was diagnosed with type 1 diabetes (also known as juvenile diabetes) about two weeks before his second birthday, after we had contacted his pediatrician about to his frequent urination and weight loss. Shocked and confused at first, we were blessed to have a wonderfully encouraging team ready to take care of us when we arrived at St. Joseph’s Children’s Hospital. Our endocrinologist, Dr. Grace Dougan, and our diabetes educator, Juliana Hite, gave us lots of support and listened to our questions and concerns. They reassured us repeatedly that Samson would live a healthy and active life, and he does.

Nov 26

Children like Alex would be helped by the ACE Kids Act

Alex bravely reaches towards the future. Though his parents feared he might not survive his early years, Alex has faced his medical challenges head on and learned to prosper in spite of them.

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. He requires major interventions to remain stable and his medical status changes frequently.

Nov 19

Medicaid Matters for Kids Mondays - Lizzie

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 revisited 2016 Family Advocacy Day alum, Lizzie.

Lizzie is 7 years old and she loves ballet, singing and playing with her little sister and friends. Resilient and determined Lizzie lives with a number of congenital conditions, including the congenital heart defect, transposition of the great arteries, profound hearing loss and pulmonary stenosis. Lizzie had her first open heart surgery when she was only five-days-old and had cochlear implant surgery at age one.

Today, Le Bonheur Children’s Hospital’s Heart Institute takes good care of Lizzie and monitors her cardiac issues. She also sees a speech therapist regularly.

“Without Medicaid there would have been no way we ever could have afforded Lizzie’s surgeries,” states Lizzie’s father. “We still rely on Medicaid to help with Lizzie’s bi-weekly speech therapy and costly echocardiograms which she needs every six months. Medicaid is essential to Lizzie’s care and helps us provide for everything she needs to be successful.”

Nov 16

561 Days

Speak Now for Kids is observing World Prematurity Day to raise awareness for this serous health crisis. Premature birth is the leading cause of death in children under the age of five worldwide. Babies born too early may have more health issues than babies born on time, and may face long-term health problems that affect the brain, the lungs, hearing or vision.

This week, we spoke with Jax’s mom, Kari, to learn more about Jax's journey as a premature baby at Children's Hospital of Wisconsin. 

561 days. That’s how long Jax has spent at the hospital before going home. Every single day since he was born on Jan. 7, 2017 — nearly three months early. But he finally went home this past July thanks to Children’s Hospital of Wisconsin’s outstanding medical team.

Because of his extreme prematurity, Jax’s lungs weren’t developed enough to function when he was born — he was diagnosed with chronic lung disease, tracheomalacia and pulmonary hypertension. My son had six different surgeries during his 561-day stay and received care from many different specialties working together to help him grow, develop and get stronger.

Nov 12

Medicaid Matters for Kids Mondays - Lily

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 Lily’s dad, Anthony, to learn how Medicaid helps military families like his.

While the family is covered under Tricare Standard, Lily’s care is supplemented by Medicaid which covers the Tricare deductible, copays, and other medical treatment and supplies that may not be covered by Tricare.

Lily was born without health issues. As a 15 month old, however, an ear infection spiraled out of control and resulted in “presumed viral encephalitis”—inflammation of the brain—leading to seizures and brain damage.

Lily’s parents manage her care needs by coordinating visits with approximately 20 specialists spread across their home state of New Jersey and neighboring Pennsylvania and Delaware. In addition, they face specialized daily concerns for her dental needs, medical equipment, education and transportation, among countless other life details.

“I changed careers because of Lily,” Anthony says. “I started in the Navy as an air traffic controller, then I became a nurse in the Navy Nurse Corps. Her care is so complex that I felt I needed medical training to help me better understand how to ensure Lily receives the necessary services, supplies and care. ”

Lily is covered by Tricare Standard, which is military health insurance, and she also receives Medicaid to supplement those things that Tricare does not cover. While Medicaid is instrumental in helping Lily gain access to needed medical services, the program presents barriers to coordinating her care—particularly when crossing state lines.

Nov 01

The Struggle, the Journey and Lessons Learned with Type 2 Diabetes

Speak Now for Kids is celebrating Diabetes Awareness Month in November to raise awareness about diabetes risk factors and encourage people to make healthy changes. This week, we spoke with Trina about her journey with type 2 diabetes and the experience of parenting son, Avery, who also has the disease.

About 30.3 million people in the United States have diabetes — it is one of the leading causes of disability and death. Yet, one in four people with diabetes don’t know they have the disease. Diabetes can cause blindness, nerve damage, kidney disease and other health problems if not controlled. But thankfully, people with diabetes can properly manage the disease by living a healthy lifestyle. 

For many years, my blood sugar was uncontrolled at high levels. If I have high glycemic food such as pasta or rice, it would trigger my brain to have more — and the cycle begins. On the outside, I had an active social life with my friends and was often praised for being a good employee. But in private, I was a real mess. I struggled with foggy brain, depression, nerve pain, skin infections, shoulder calcifications, fatigue and panic attacks.

Oct 29

Children like Sophia would be helped by the ACE Kids Act

“Through years of hard work, determination, and the support of doctors, therapists, friends, and family, Sophia continues to gratify and amaze us with all that she can do,” says mom, Alicia.  

Diagnosed with cerebral palsy, right hemiplegia, and global developmental delay, all before the age of one, it was unknown if she would ever walk, talk or meet other developmental and cognitive milestones. 

A team of specialists ranging from neurology to hematology, physical, occupational, and speech therapists, gastroenterologists, ophthalmologists, audiologists, and physiatrists worked together to ensure the very best care for Sophia.

Today Sophia is able to eat and walk independently, and while she is still working on some speech articulation issues, she talks. . . a lot!  She continues to defy the odds. Her fine and gross motor coordination have improved and with the support of special educators.

But it has not been easy. Sophia’s potential would not have been realized without early intervention and regular access to intense pediatric therapies and ongoing specialty care via Medicaid.

Oct 26

Desmond and His Lokomat Therapy Machine

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 children’s hospitals. Today’s blog is about Desmond and his Lokomat machine from Beaumont Children’s Hospital.

If you saw 3-year-old Desmond, you would never know his mom feared he might not walk again.

The day everything changed for this Michigan family seemed like any other day. Desmond cheered his cousin on at a football game. But, after the game, Desmond fell and couldn’t stand back up.

His parents found themselves in a room full of doctors at Beaumont Children’s Hospital who told them Desmond had a tumor, about the size of an olive, on his spinal cord. “I collapsed and my husband and I started crying,” his mom says.

Oct 22

Medicaid Matters for Kids Mondays - Cici

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 Cici’s mom, Jenny.  

At 11 months old, Cici choked on a piece of fruit. Her mom quickly called 911. During the 11-minute ambulance ride to the hospital, Cici’s heart stopped. Within the hour, a helicopter airlifted her to Children’s Hospital Colorado where the pediatric intensive care unit managed to stabilize her.

We went from having a typical child to having a severely disabled child overnight. My daughter suffered hypoxic brain damage from the choking accident, causing her to be physically disabled. Her brain doesn’t communicate with her muscles well, and she struggles to keep her airway open enough to breathe on her own. She cannot walk or talk, and relies on a feeding and breathing tube.

Children’s Colorado allows us to access all pediatric specialists at the same place. The doctors and nurses there coordinated well for complex procedures, like the spinal fusion she had a year ago. Cici’s condition has progressed tremendously since entering treatment at Children’s Colorado. It took a few years to get her new life under control, but she is now in a stable place. She rarely goes to the doctors and only gets admitted for surgeries. We have things under control at home, and only call the experts when needed, without having to physically go to the hospital too often.

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