Rare and Complex Conditions

Earlier this year, I donated my kidney to someone with whom I’ve never met. People often ask me, “Why on earth would you donate your kidney to a stranger?” I often respond with, “Why wouldn’t I?”  I’m the perfect candidate › Continue Reading

Somewhere along the way, someone decided that in order for foods to be “holiday worthy” they need to have nuts in them. It’s happened to normally nut-free foods everywhere. Sweet potatoes. Fruit salad. Vegetable salad. Don’t even get me started › Continue Reading

We probably don’t give much thought to the functioning of our stomachs. We may think about how hungry we are and then forget about it once we’re full. However, for kids with gastroparesis, it’s likely on their minds all of › Continue Reading

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 and depending on what type of eating plan they’re on, they › Continue Reading

This time of year is often a season of giving, reflection, and thanks. As a mom of a special needs child with a rare and complex condition, I dish out many “thank yous.” But I but often find it hard › Continue Reading

When you learn that your child may need a bone marrow transplant (BMT), you will naturally have a lot of questions. We encourage you to ask as many as you need to, as having a thorough discussion may help you › Continue Reading

Whether your child has just had her first seizure or several, they are scary to watch and can seem catastrophic. Seizures are caused by electrical changes in the brain and the resulting symptoms can vary widely from person to person › Continue Reading

Families of kids with pancreatitis are hungry for information and strategies to help them manage their condition and feel better. Pancreatitis is inflammation of the pancreas that can cause significant pain, swelling, infection, or permanent damage to the organ. This › Continue Reading

Children can encounter stress at any phase in their lives. However, kids with chronic gastrointestinal (GI) disorders have additional stressors on top of the ordinary pressures of childhood. They have many more doctors’ visits, medical procedures, injections, and exams. And › Continue Reading

September is National Sickle Cell Awareness Month. In the United States, there are approximately 100,000 individuals living with sickle cell disease and millions of people worldwide. Our team of sickle cell experts treats nearly 300 children – providing care from › Continue Reading

When Roman was diagnosed with neuroblastoma at 18 months old, we were solely focused on his survival. Receiving a diagnosis like this felt like a typhoon and a tornado hitting us at the same time. Complete devastation and total helplessness. › Continue Reading

To the grandparents of kids with complex medical conditions, and especially my kids’ grandparents: I salute you. I salute you, because there are not enough words or a combination of words to express how much we appreciate you.  I salute › Continue Reading

Aches and pains are a normal part of childhood, which can make it difficult to recognize and diagnose conditions such as juvenile idiopathic arthritis (JIA). Early diagnosis of JIA is key, as the sooner kids are diagnosed, the sooner treatment › Continue Reading

I would like to start by saying congratulations! Preparing for a newborn baby is an exciting time in any parent’s life. Receiving the news that your baby has a cleft lip/palate can be overwhelming, but preparation up front can be helpful › Continue Reading

Houston, you have a problem As a top 50, nationally-ranked squash player, fitness and endurance have been a key part of my life. However, during an important squash tournament in July 2016, I started feeling short of breath, fatigued and › Continue Reading

A Letter To My Son’s Heart Surgeon: I passed you in the hall today. I recognized you immediately, even though we’ve only spoken a few times. Your face and your hands are emblazoned in my memory. You held my son’s › Continue Reading

I first learned I had scoliosis when I was in the sixth grade. My mom was rubbing my back and she thought it felt weird. Therefore, we went to the doctor and she used a measuring tool to determine that › Continue Reading

When you’re the parent of an infant, there’s a lot to think about and consider – especially when it comes to safety. There are practices for safe sleeping, car seat riding, bathing, diapering, and the list goes on and on. › Continue Reading

When parents first learn that their child has Duchenne muscular dystrophy (DMD), they are understandably worried. DMD is a genetic disease that causes muscles to weaken slowly over time. DMD is commonly diagnosed in childhood, when kids start missing major › Continue Reading

When your child is diagnosed with celiac disease, deciding what to eat can feel overwhelming! That's why we've put together a list of safe and unsafe ingredients for kids and parents to reference. The good news is that there are many gluten-free grains › Continue Reading

My oldest son, Austin, celebrates his 25th birthday in May. It’s quite a milestone, given that three years ago his heart stopped beating and he collapsed on a softball field. And that’s not even the beginning of his story. Austin’s › Continue Reading

If your child has an upcoming allergy skin prick test, you may be wondering what is involved. After all, you were informed that you could be in the allergy clinic for a couple of hours. So what exactly happens during › Continue Reading

It has been just about four years since my last blog post and I am thrilled to have the opportunity to provide an update on everything that has happened since then! How My Liver Transplant Journey Began My journey began › Continue Reading

Five years ago, I wrote about the amazing care our son Adam was receiving at Cincinnati Children’s for chronic myeloid leukemia (CML).  Fast forward to 2019, nearly four years after he graduated from college, he is living life to the › Continue Reading

Liver cancer happens when cancer cells develop in the tissue of the liver, forming solid tumors. The common form, hepatocellular carcinoma, is more common in adults than children. Hepatoblastoma, the common form for liver cancer in children, occurs in about › Continue Reading