Joshua is a charismatic and inquisitive 4-year-old who loves cars, singing, reading, exploring and playing the piano. In 2012, he was diagnosed with eosinophilic esophagitis (EOE), a rare autoimmune condition where eosinophils—a type of white blood cell—build up in the lining of the esophagus. EOE lowers immunity and reduces the body’s ability to fight infections. It also affects the body’s ability to swallow food and can cause significant food and environmental allergies.
Impact on children’s health careShare
For five months, Lily was a happy, healthy baby. Suddenly she stopped reaching for her toys and could no longer hold up her head. A visit to the emergency room at Children’s National Medical Center led to various tests which revealed that Lily had Krabbe, a rare genetic disease. Lily’s parents were told that there was nothing that could be done and their daughter would live another seven months. During this time they were to keep her as comfortable as possible through daily seizures, loss of hearing and sight, and eventual death.
Kyla was diagnosed with sickle cell disease when she was 9 months old and had her first episode. With sickle cell, the red blood cells that carry oxygen through the bloodstream can become sickle-shaped instead of being round, causing them to break down prematurely. This will often cause low red blood cell count (anemia), increased infection rates, and episodes of pain.
Austin was just 3 years old when he was diagnosed with fragile X syndrome, a genetic condition causing intellectual disability, behavioral and learning challenges, and various physical characteristics. Now a fourth grade student, Austin’s mother credits his success to receiving an early and proper diagnosis and having access to occupational, physical and speech therapies.
You may remember Kara as a previous Family Advocacy Day attendee. Born by emergency Caesarian section when her fetal heart rate dropped, Kara suffered an 80 percent blood loss and wasn't expected to survive. Due to the loss of oxygen, she suffered immediate onset of seizures at birth, had kidney failure and was diagnosed with failure to thrive. Her condition fluctuated daily as Kara underwent reflux surgery and a gastrostomy tube was inserted. At 2 months old, she was stable enough to go home, but faced a long, uncertain road. Kara was immediately admitted to the inpatient day program at Children’s Specialized Hospital. There she received intense daily therapy with a team of professionals who worked with Kara and assisted her family as they learned how to care for her. Today, Kara attends a school for children with special needs full time.
Marina lived the first three years of her life in the abandoned baby ward of a Ukrainian hospital. Despite being born with multiple health conditions and malformations, she has an indomitable will to live. Marina captured the heart of an American missionary family who brought her to the United States at age 3 in a desperate attempt to save her life, which so far has included 15 surgeries. Marina’s day-to-day survival is dependent on an intricate web of pediatric specialists, medical equipment and clinical support.
Jebrill was premature and diagnosed with failure to thrive when he first came to live with his family. To address this, he received physical and occupational therapy services at Children’s Specialized Hospital from the ages of 3 months to 7 years old. At the age of 4, Jebrill was also diagnosed with attention deficit hyperactivity disorder (ADHD) and was placed on the autism spectrum. The therapists at the hospital created a behavioral plan and structure that carried over in home and school so he could socialize and interact appropriately with family and peers.
After battling instances of dizziness, passing out, both low and high blood pressure, and digestive issues, Andrea was diagnosed with postural tachycardia syndrome (POTS). Considered an autoimmune disorder, POTS causes a patient’s heart to work harder to maintain blood pressure and blood flow to the brain. Mostly seen in women under the age of 35, the cause is currently unknown.
When Charlie was 3 years old he was diagnosed with Moyamoya disease, a rare disorder of the brain where arteries narrow, causing stroke-like symptoms. Because of this, he was required to spend a great deal of time being treated by the neurocritical care team and neurosurgery team at Ann & Robert H. Lurie Children’s Hospital of Chicago. He has had two successful brain surgeries and is doing very well.
By: Judith L. Page
Earlier this month, the American Speech-Language-Hearing Association (ASHA) released the results of a new national poll of parents of children ages 0-8 on their children’s use of technology. It found significant percentages reporting technology use by very young children. It also found more than half of the parents surveyed have concerns about the potential negative impact of technology use on the ability of the young to communicate. Among the highlights: