Rare and Complex Conditions
Liver Transplant Recipient Becomes Nurse on Same Floor
The first day of a new job is always a mixture of emotions. For Kara Westra, things felt like they had become full circle. That's because she was once a patient on the liver transplant floor, and now she is a nurse treating the same types of patients.
Caring for a Medically Complex Child: Your Resource Checklist
Children who are considered medically complex require a very high level of daily medical care. This term is different than the more commonly known term of “special needs,” which usually
Four Things To Know About Sickle Cell Disease
Sickle cell disease is the most common genetic blood disorder in the United States. It is also often misunderstood. Learn four things about sickle cell and the people it affects.
How an Immunocompromised Family is Handling COVID-19
Any virus can send an immunocompromised kid to the hospital. Read how an immunocompromised family takes extra steps to keep their daughter safe during COVID-19.
Child Life Helps Patient with Anxiety Through 50-75 Yearly Procedures
Soraya is a particularly anxious kiddo and also has multiple health issues without a specific diagnosis. She needs around 50-75 medical procedures each year to help her doctors get the data they need to treat her. Read how child life has completely changed her health care experience.
How I Became an Advocate for My Child’s Rare Condition
My child has a condition called MFDM that affects only about 200 people in the entire world. When he was diagnosed with such a rare condition, we felt incredibly alone. I needed to connect with other families who would understand.
Functional Independence: Why I’ve Worked Out for 400+ Days
Before the Functional Independence Restoration Program, Ashten was in so much pain, including dislocations from ehlers-danlos syndrome, that he couldn't get out of bed. Read how this program helped him to rebuild his body so that he could function again -- including high school graduation and applying to colleges!
Giving the Gift of Life Twice: Living-Related Donor Transplant
Katherine was diagnosed with biliary atresia soon after birth and ultimately needed a liver transplant. Without a viable transplant option available, it was determined that her mother was a good living-related donor match. Read how she gave Katherine the gift of life twice!
Altruistic Kidney Donation: Why I Donated My Kidney to a Stranger
Ashley kept seeing signs that so-and-so needed a kidney. So she learned everything she could about altruistic kidney donation and decided to donate hers. Read about what was involved and the difference that it made.
7 Additional Things to Know About Pediatric Gastroparesis
Gastroparesis, a condition in which the stomach takes too long to empty, can be quite uncomfortable. When kids are first diagnosed, families do a lot of research to learn everything they can about it and often have additional questions. Read on to learn further information about this complex gastrointestinal disorder.
Kids & Inflammatory Bowel Disease: Tips for Handling the Holidays
For the families of kids with inflammatory bowel disease (IBD), the holidays can be a tough time of year. So many of our holiday traditions are centered on food! Read recommendations for a balanced approach: enjoying a festive treat while sticking to an eating plan.
Giving Thanks for Asparagine Synthetase Deficiency Disorder Diagnosis
Whole exome sequencing found that Ryder has Asparagine Synthetase Deficiency Disorder, a condition with which only about 20 in the world have been diagnosed and research states they do not live past infancy or early childhood. Read why Ryder's parents are so thankful for where they are right now.
Common Seizure Triggers in Infants and Children
Everyone has a seizure threshold in their brain, meaning that anyone can have one but some of us are more susceptible than others. Read this list to help track them and narrow down the potential triggers.
Can Pediatric Pancreatitis Be Managed with a Specific Diet?
Families of children with pediatric pancreatitis wonder if specific foods could have triggered their child's symptoms and/or if a specific diet could help control it. Learn what we recommend and what studies have shown to work the best.
Helping Kids with Gastrointestinal Disorders Cope and Return to School
Kids with chronic gastrointestinal disorders have additional stressors on top of the ordinary pressures of childhood. A child psychologist explains some techniques to cope so that they can return to school and their favorite activities.
An Ode to the Grandparents of Kids with Complex Medical Conditions
"Grandparents of kids with complex medical conditions, I salute you for being present for the good, the bad, the beautiful, the ugly and everything in between. You do it because you want to. You do it because you care. And you love our kids just like we do. I salute you because we would be lost without you."
8 Misconceptions About Juvenile Idiopathic Arthritis (JIA)
Juvenile idiopathic arthritis (JIA) is often thought of an older person's disease, but in fact 1 in 1,000 kids have it. Because it is an under-recognized condition, one of our rheumatologists explains the top misconceptions about it.
Preparing for a Baby with a Cleft Lip/Palate
Preparing for a newborn is an exciting time for any parent. Here are some things to consider when you're preparing for a baby with a cleft lip/palate.
kEEN on Alternative Therapies for Inflammatory Bowel Disease
It took Rohan three years to receive a proper diagnosis of Crohn's disease, and another two years of trying various treatments. It wasn't until his doctor suggested an exclusive enteral nutrition (EEN) diet that he found relief. Learn more about this method and how it can help those with inflammatory bowel diseases.
My Journey with an “S” Curve and Adolescent Idiopathic Scoliosis
Madeline's S-shaped adolescent idiopathic scoliosis progressed into two nearly 70-degree curves. It's now been more than five years since she had surgery; read about what she's doing and the sport she's currently playing.