Rare and Complex Conditions

Like many families across the country, we are anxious about the new coronavirus disease, COVID-19.   However, our family may be different from some in that we are used to being cautious during viral outbreaks such as influenza. Our daughter, › Continue Reading

You wouldn’t know it by looking at her, but my seven-year-old daughter, Soraya, is a particularly anxious child. I say that because on the outside, she is cheerful and colorful. She wears bright-colored clothing and has the best attitude and › Continue Reading

Recently my 14 year-old son, Cecil, attended his class trip to New York City and Washington DC. While this sounds like a typical milestone for many teens, this trip and the preparation for going on the trip, were anything but › Continue Reading

In America, rare diseases are defined as disorders that affect fewer than 200,000 people in the country. My child has a condition affecting about 200 people in the entire world — that’s out of roughly 7.2 billion people in case › Continue Reading

I exercised 478 days in a row. You’re probably assuming that I’m a body builder. Well, I guess in a way I sort of am.  I’ve learned how to “rebuild” my body so that I can function again. You see, › Continue Reading

Hearing the news that your baby has a congenital heart defect (CHD) can bring a wave of emotions, ranging from sadness to anger to guilt. Understandably, you’ve gone from having a “healthy” baby to an “unhealthy” one in a moment’s › Continue Reading

We named our daughter Alana Faith, because it sounds like “a lot of faith.” It felt appropriate given how greatly we needed to lean on it from the very beginning of her life.    A Complex Combination of Diagnoses Alana › Continue Reading

My daughter, Katherine, was born on June 13, 2011, along with her twin brother, Kevin. We brought them home to an already full household. At the time her “older” brothers were 18 months and almost three years old. Their first › Continue Reading

Finding out that you are expecting is usually a time of celebration and anticipation. But when you learn that your baby has a complex fetal diagnosis, that experience changes quickly. You may be feeling scared, angry or frustrated. You will › Continue Reading

You may remember my daughter, Riley. I wrote about her a couple of years ago in a previous blog post. She was diagnosed with pulmonary hypertension when she was four years old. At that time, she had to wear a › Continue Reading

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