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Rare and Complex Conditions

Heart Conditions
Hypoplastic Left Heart Syndrome: A Letter to Our Son’s Heart Donor Family
14
Feb 2018
Hypoplastic Left Heart Syndrome: A Letter to Our Son’s Heart Donor Family
Eli was born with hypoplastic left heart syndrome and soon after needed a heart transplant. Read how grateful his family is to his heart donor and family.
By: Kelcie Kleckner | 0
Heart Conditions
A Mother’s Perspective: Finding the Right Pediatric Cardiologist
07
Feb 2018
A Mother’s Perspective: Finding the Right Pediatric Cardiologist
Read why this heart mom hasn't stopped worrying about her son's heart 26 years later, and why it is important to find the right pediatric cardiologist.
By: Zerlina Dubois | 6
Heart Conditions
Born with Congenital Heart Disease: 5 Things I Wish I’d Done Differently
01
Feb 2018
Born with Congenital Heart Disease: 5 Things I Wish I’d Done Differently
Jennie was born with congenital heart disease but is now an adult. Read why she considers herself lucky in health and life and what she'd do differently.
By: Jennie Fox | 7
Rare and Complex Conditions
Tips for Planning a Vacation with A Child Who Has Special Needs
30
Jan 2018
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.
By: Suzan DeCicca, LSW | 3
Rare and Complex Conditions
27
Dec 2017
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.
By: Valeka Riegel | 14
Rare and Complex Conditions
Cystic Fibrosis Questionnaire: Is Your Adolescent Ready for Independence?
12
Dec 2017
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.
By: Lisa Burns, MD | 0
Food Allergies
Tips for Hosting a Food-Allergy-Friendly Holiday Party
05
Dec 2017
Tips for Hosting a Food-Allergy-Friendly Holiday Party
The holidays can be challenging when you or a guest have food allergies. Here are helpful tips to consider this holiday season.
By: Julie Daisey, MS | 0
Heart Conditions
Pulmonary Hypertension: How We’ve Adapted to Our Daughter’s Condition
27
Nov 2017
Pulmonary Hypertension: How We’ve Adapted to Our Daughter’s Condition
Riley's mom feels fortunate that her daughter avoided the serious symptoms of pulmonary hypertension while seeking a diagnosis. Read how they've adapted
By: Kelly Wiegele | 1
Heart Conditions
Tetralogy of Fallot: Giving Thanks on Henry’s Second Anniversary
21
Nov 2017
Tetralogy of Fallot: Giving Thanks on Henry’s Second Anniversary
A mother gives thanks to the staff who shepherded her, her son, and her family through her son's tetralogy of Fallot diagnosis, surgery and beyond.
By: Laura Kohus | 1
Rare and Complex Conditions
5 Things I Want You To Know About My Daughter with Treacher Collins
09
Nov 2017
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:
By: Russ Broomell | 2
Heart Conditions
Top 5 Things to Remember About Kawasaki Disease
08
Nov 2017
Top 5 Things to Remember About Kawasaki Disease
Kawasaki disease is the leading cause of acquired heart disease in children. While is it rare, it can easily be misdiagnosed as other more common viral illnesses. Here are 5 things parents should know about the disease.
By: Devin Tinker, MSN | 4
Rare and Complex Conditions
Hip Dysplasia as an Adult: Tips Following Surgical Treatment
02
Nov 2017
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
By: Shannon Robertshaw Carroll | 11
Cancer and Blood Diseases
Ewing’s Sarcoma: A Sentimental Look Back
01
Nov 2017
Ewing’s Sarcoma: A Sentimental Look Back
Samantha, a young adult Ewing's sarcoma survivor, looks back at her diagnosis, treatment & recovery. But what she's most excited about is the look forward.
By: Samantha Morrissey | 2
Heart Conditions
Adults with Congenital Heart Disease: Do You Struggle with Executive Functioning?
26
Oct 2017
Adults with Congenital Heart Disease: Do You Struggle with Executive Functioning?
If you're an adult with congenital heart disease, you are at-risk for having executive functioning issues. Answer these questions to assess your risk.
By: Christina Holbein, PhD | 1
Heart Conditions
Awareness Needed: Anomalous Aortic Origin of a Coronary Artery
12
Oct 2017
Awareness Needed: Anomalous Aortic Origin of a Coronary Artery
Anomalous aortic origin of a coronary artery is the second leading cause of sudden cardiac arrest in teens. Learn why more awareness is needed.
By: Thomas Kimball, MD | 6
Cancer and Blood Diseases
4 Must-Know Points About CAR T-Cell Therapy
10
Oct 2017
4 Must-Know Points About CAR T-Cell Therapy
CAR T-cell therapy could potentially offer a cure to kids with relapsed acute lymphocytic leukemia. Here’s what parents need to know about it:
By: Christine Phillips, MD | 6
Rare and Complex Conditions
Receiving a Serious Diagnosis for Your Child: How to Move Through It
29
Sep 2017
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.
By: Erin Hillman, LSW | 0
Food Allergies
Handy Checklist: Going to College with an Eosinophilic Gastrointestinal Disorder
20
Jul 2017
Handy Checklist: Going to College with an Eosinophilic Gastrointestinal Disorder
Because preparing for college with an eosinophilic gastrointestinal disorder can add complication to your search, here is a list of things to consider:
By: Nicole Zahka, PhD | 1
Rare and Complex Conditions
Boy with Hirschsprung Disease Accomplishes Nutrition Milestone
29
Jun 2017
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.
By: Emily Greenwell | 8
Healthy Living
Help Understanding Difficult-To-Treat Asthma
01
Jun 2017
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.
By: Theresa Guilbert, MD | 0
Rare and Complex Conditions
Pushing for Progress in a Rare Eosinophilic Condition: Eosinophilic Gastritis
15
May 2017
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.
By: Julie Caldwell, PhD | 8
Fitness and Nutrition
Handy Checklist: Tips for Dining Out with Celiac Disease
11
May 2017
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!
By: Emily Romantic, RD | 0
Rare and Complex Conditions
4 Surprising Facts About Celiac Disease
09
May 2017
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 these facts about it.
By: Abi Lepolt, RD, CSP, LD | 2
Rare and Complex Conditions
Handy Checklist: Playing Sports with Inflammatory Bowel Disease
28
Apr 2017
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.
By: Meghan Grable | 3
Rare and Complex Conditions
You Are Not Alone: 4 Tips for Kids and Teens with IBD
11
Apr 2017
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.
By: Owen Serey | 0

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