Lucia is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Lucia will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Lucia, aka Lucy, is a bright and social 5-year-old girl with a natural love for learning. She is eagerly awaiting her kindergarten debut — she’ll attend her neighborhood elementary school five days a week starting next year!
Lucy’s kindergarten experience is sure to be the amazing adventure it is for all kids, but her school days will be a bit unique, as she’ll do it all with a private-duty nurse by her side. 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.
Abby is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Abby will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Pregnancy is often marked by joy and anticipation for a child’s future. Imagine being told that your baby would not survive long after birth, if at all, due to a large brain tumor discovered in utero. That’s what happened to Erika and Stephen Jones when a large tumor was spotted on their baby’s brain during a 30-week ultrasound.
The couple had already been told several weeks earlier that their daughter, Abby, would have Down syndrome, and they had come to terms with the news. But an aggressive tumor thought to be cancerous was something they just could not accept.
My son, Alexander, is five years old and has Medicaid through a waiver program. He was diagnosed with Tetralogy of Fallot at 2 ½ months old and relied on Medicaid since birth.
Once Alexander was diagnosed with his condition, our entire lives changed. He started having medical testing and surgeries. In five short years, Alexander has had six chest caths and three open heart surgeries. He also has had 12 other surgeries and procedures so far.
Enrolling in Medicaid may have health benefits not only for low-income parents but also for their children, according to a Johns Hopkins analysis of more than 50,000 parent-child pairs.
In the study, based on survey data, the investigators found that children of low-income parents enrolled in Medicaid had a 29 percent higher probability of receiving a well-child visit compared with children of low-income parents not enrolled in Medicaid.
The relationship between well-child visits and Medicaid enrollment was strongest in families with incomes of 100 percent to less than 200 percent of the federal poverty level, or about $24,600 annually for a family of four (in 2017 numbers). Among those families, the probability of a well-child visit was 45 percentage points higher if a parent was enrolled in Medicaid.
“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 from both Blank Children’s Hospital in Des Moines, Iowa and Gillette Children’s Specialty Healthcare in Minneapolis, Minn. ensured the very best care for Sophia.
Six-year-old Lizzie 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.
The summer months are special to children for many reasons, and this summer is no different. As mercury levels are at their peak, we celebrate the anniversaries of two very important programs that have had a lasting positive impact on millions of children. In July we celebrated the 52nd birthday of Medicaid, and this month we celebrate the 20th anniversary of the Children’s Health Insurance Program (CHIP). Medicaid and CHIP combined provide health insurance coverage to over 36 million children in the United States.
CHIP will officially turn the big 2-0 on Saturday, Aug. 5. Since its enactment, CHIP, along with Medicaid, has helped shrink the number of uninsured children by a whopping 68 percent. CHIP’s funding is set to expire in less than two months, and all the progress that has been made may come undone if Congress doesn’t act soon.
Tom represented Franciscan Children’s Hospital at last week’s Speak Now for Kids Family Advocacy Day event in Washington, D.C.
Born four months premature, weighing 1 pound 5 ounces with a height of 11 inches, Tom immediately faced tough odds. His organs weren’t fully developed, he could not breathe on his own and his retinas were not fused leaving him legally blind. Tom underwent many surgeries and spent a total of 119 days in the NICU before he was healthy enough to go home to his family with the ability to breathe on his own and without the need for any medication.
“The doctors thought I was going to die… but I didn’t… I am a fighter,” proclaims Tom.
One of the primary reasons the Senate Republicans' proposal to repeal and replace the Affordable Care Act failed to get enough votes is because of how it would have cut Medicaid spending. Children's hospitals are particularly concerned about the possibility of Medicaid cuts, and the impact on children.
Here & Now's Robin Young talks with Mark Wietecha, president and CEO of the Children's Hospital Association, about his concerns about Medicaid cuts and what kind of health care revisions he wants to see.
At two months old, Olivia began experiencing seizures. That day, the family sought emergency medical attention from a neurologist at the Children’s Hospital of Chicago. The results of an MRI, eye exam, and other testing confirmed that Olivia had Aicardi Syndrome, a rare condition caused by a genetic mutation that limits physical and cognitive development. Girls with her diagnosis have an average life expectancy of eight years.
Despite the “shock and heartbreak” of learning that her daughter’s illness was not curable, Olivia’s mother has “always been impressed and thankful that the children's hospital diagnosed her rare syndrome in less than 24 hours. There was a relief in knowing what we were dealing with.”