Rare and Complex Conditions
Dancing Through Life With Idiopathic Scoliosis
Annie was diagnosed with idiopathic scoliosis, with a 32 degree S curve when she was 8 years old. Her family and doctors opted for her to wear a brace, rather than surgery, which allowed her to dance competitively.
Anorectal Malformations: Will My Child Ever Be Continent?
Parents often wonder if their child with an anorectal malformation will ever be continent. A colorectal surgeon explains the answer to this question.
How The Ketogenic Diet Helped My Son With Refractory Epilepsy
Will, diagnosed with refractory epilepsy, was having up to 100 seizures a day. Read how the ketogenic diet helped him achieve seizure freedom.
A Mother’s Perspective: Finding the Right Pediatric Cardiologist
Read why this heart mom hasn't stopped worrying about her son's heart, 20 years later, and why it is important to find the right pediatric cardiologist.
Tips for Planning a Vacation with A Child Who Has Special Needs
With extra planning, it is possible to take a vacation with a child who has special needs. Read a social worker's list of items to consider.
A Letter to My 1-Year-Old Son, Who Had an Encephalocele
A mother pens a letter to her son, who was born with a large encephalocele. Read her account of their tumultuous year and unconditional love.
Cystic Fibrosis Questionnaire: Is Your Adolescent Ready for Independence?
By learning how to care for themselves, kids with cystic fibrosis gain skills they need to be healthy adults. Take our survey to see if your child is ready.
5 Things I Want You To Know About My Daughter with Treacher Collins
Shana has Treacher Collins, a condition where some of the bones & tissues in the face aren’t fully developed. Read what her dad wants you to know about her:
Hip Dysplasia as an Adult: Tips Following Surgical Treatment
Shannon was re-diagnosed with hip dysplasia in adulthood, after her infant daughter was evaluated for the same condition. Here's her tips folllowing surgery
3 Common Misconceptions About Palliative Care
Palliative care can play a valuable role in the lives of all kids with serious diagnoses, but is often misunderstood. Read 3 common misconceptions about it.
Receiving a Serious Diagnosis for Your Child: How to Move Through It
Receiving a serious diagnosis for your child can be heartbreaking. Read a social worker's six steps to help parents "move through" it.
Boy with Hirschsprung Disease Accomplishes Nutrition Milestone
Quinn, who has intestinal aganglionosis, the most severe form of Hirschsprung Disease, achieved a "window" of time without assistive nutrition modalities.
Help Understanding Difficult-To-Treat Asthma
Some kids may have difficult-to-treat asthma, despite doing the right things, like taking medicines and reducing exposures to triggers. Read 5 reasons why.
Pushing for Progress in a Rare Eosinophilic Condition: Eosinophilic Gastritis
Eosinophilic gastritis is a rare type of eosinophilic gastrointestinal disorder. Patients may have a long, challenging journey to receive a diagnosis.
Handy Checklist: Tips for Dining Out with Celiac Disease
Parents of children with celiac disease may find dining out to be a stressful experience. Read one of our dietitian's tips for making it work!
4 Surprising Facts About Celiac Disease
Celiac disease is a tricky condition. It is often missed or mistaken for other conditions. Learn more by reading 4 surprising facts about it.
Handy Checklist: Playing Sports with Inflammatory Bowel Disease
Playing sports with inflammatory bowel disease (IBD) is possible. Here are 8 tips from a college athlete to keep in mind before, during and after a game.
You Are Not Alone: 4 Tips for Kids and Teens with IBD
Patients with IBD, or Crohn's and colitis, can face feelings of isolation, fear and embarrassment. Read one patient's tips to help manage them.
From Undiagnosed to Bohring-Opitz Syndrome: Finding Our Crew
It took Michelle 10 years to find a diagnosis for her daughter's ultra-rare condition, Bohring-Opitz Syndrome. Read why she's happy to find their "crew."