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Rare and Complex Conditions

Heart Conditions
Heart to Heart: Ryan Meets Kirk Urso – Part 2
05
Mar 2016
Heart to Heart: Ryan Meets Kirk Urso – Part 2
When Ryan met Columbus Crew player Kirk Urso, he had a new friend and role model. Little did they know they were both living with congenital heart disease.
By: Kevin and Emilie Moore | 0
Heart Conditions
Heart to Heart: Ryan and Kirk’s CHD Story – Part 1
04
Mar 2016
Heart to Heart: Ryan and Kirk’s CHD Story – Part 1
Ryan continues to tell his inspiring congenital heart disease story in books, on Capitol Hill and to other CHD families in hopes of someday finding a cure.
By: Kevin and Emilie Moore | 0
Heart Conditions
New Animations: Surgical Repair of Congenital Heart Disease
29
Feb 2016
New Animations: Surgical Repair of Congenital Heart Disease
To help families better understand and describe the surgical repair for their child's congenital heart disease, we developed these animated videos.
By: Ryan Moore, MD | 1
Patient Family Experience
Receiving Your Child’s Diagnosis: What to Do Next
18
Feb 2016
Receiving Your Child’s Diagnosis: What to Do Next
Parents often feel helpless following a definitive diagnosis for their child. One of our social workers offers potential next steps to take.
By: Suzan DeCicca, LSW | 0
Patient Family Experience
IBD: 3 Lessons from an Experienced Parent
22
Jan 2016
IBD: 3 Lessons from an Experienced Parent
A mom reflects on her child's experiences with IBD and Crohn's disease, now that he has graduated college and is heading out on his own.
By: Linda Weaver | 11
Heart Conditions
Building Blocks of Recovery
21
Jan 2016
Building Blocks of Recovery
Sometimes normal kid things can be the best recovery tools!
By: Jennifer Dickson | 1
Food Allergies
Allergy Friendly Cookies: Milk, Egg and Wheat Free
21
Dec 2015
Allergy Friendly Cookies: Milk, Egg and Wheat Free
Make allergy friendly cookies this year with a recipe that is milk-free, wheat-free and egg-free.
By: Kara Kliewer, PhD, RD | 0
Rare and Complex Conditions
Isovaleric Acidemia: Micah’s Metabolic Journey
18
Dec 2015
Isovaleric Acidemia: Micah’s Metabolic Journey
When he was just a few days old, Micah was diagnosed with Isovaleric Acidemia. His mom shares the story of those scary first days and how far he's come.
By: Lisa Hensley | 1
Food Allergies
 

13
Dec 2015
Allergy-Friendly Recipe: Berry Muffins
Our dietitians put together holiday recipes that exclude six of the most common food allergens.  (Recipe courtesy of Raquel Durban). Ingredients 2 cups gluten free flour 3 frozen bananas 1 cup frozen berries 3/4 cup sugar 1/2 cup applesauce 2 tablespoons of chia seeds mixed with 6 tablespoons of water 1 teaspoon baking soda Preparations
By: Carina Venter, PhD, RD | 0
Food Allergies
 

12
Dec 2015
Allergy-Friendly Recipe: Creamy Pasta Sauce
Our dietitians put together holiday recipes that exclude the six most common food allergens. Recipe courtesy of Bethany Doerfler. Ingredients(serves 4) 1 can white kidney (cannelloni) beans 2-3 Tbsp olive oil 3-4 plum tomatoes (diced) ½ cup black or Kalamata olives 6-8 fresh basil leaves 1 small onion (diced) 1 clove garlic ½ cup gluten
By: Carina Venter, PhD, RD | 0
Food Allergies
 

12
Dec 2015
Allergy-Friendly Recipe: Healthy Lazy Soup
Our dietitians pulled together holiday recipes that exclude six of the most common food allergens. This is a great one for when you don’t feel like cooking. Recipe courtesy of Bethany Doerfler. Ingredients (serves 4) 6-8 cups Gluten Free chicken broth 1 pound boneless skinless chicken breast 4-5 carrots 4-5 celery stalks 1 medium onion 2
By: Carina Venter, PhD, RD | 3
Food Allergies
 

12
Dec 2015
Allergy-Friendly Recipe: Apple Pie
Our dietitians put together holiday recipes that exclude the six most common food allergens. Enjoy! Ingredients Pie Dough 5 cups of gluten free flour + extra for rolling the dough 1/2 teaspoon of salt 1/2 teaspoon of xantham gum (but can be omitted) 1/2 teaspoon of vanilla 1 teaspoon cinnamon 1/4 teaspoon of nutmeg (but
By: Carina Venter, PhD, RD | 0
Food Allergies
 

12
Dec 2015
Allergy-Friendly Recipe: Honey Glazed Baby Carrots
Our dietitians put together holiday recipes that exclude the six most common food allergens. This recipe also works with Brussels sprouts. Enjoy!  Ingredients 16 oz bag of carrots 2 tablespoons honey 2 tablespoons coconut oil 1 tablespoon lemon juice Salt and pepper as required  Preparation Cover carrots with water and bring to boil until the
By: Carina Venter, PhD, RD | 0
Food Allergies
 

12
Dec 2015
Allergy-Friendly Recipe: Extra Fluffy Mashed Potatoes
Our dietitians put together holiday recipes that exclude the six most common food allergens. Enjoy! Ingredients 8 lbs baking potatoes, peeled and cubed 1/2 cup Unflavored elemental formula or any milk substitute 1 cup unsalted chicken stock (or homemade) 2 tablespoons oil 1 1/4 teaspoons salt For the topping ½ stick (4 tablespoons) dairy free spread
By: Carina Venter, PhD, RD | 0
Food Allergies
 

12
Dec 2015
Allergy-Friendly Recipe: Meat Balls
Our dietitians put together holiday recipes that exclude the six most common food allergens. This one is courtesy of Bethany Doerfler.  Ingredients (Serves 4) 1 lb fresh ground beef, chicken or pork ¼ cup Heinz Ketchup 2-3 Tbsp olive oil Potato chips (10-12) ½ cup Rice Chex cereal Salt and Pepper to taste 1 tsp dried
By: Carina Venter, PhD, RD | 0
Food Allergies
 

12
Dec 2015
Allergy-Friendly Recipe: Pan-Fried Chicken with Meat Suace
Recipe: allergy friendly pan-friend chicken with meat sauce.
By: Carina Venter, PhD, RD | 0
Rare and Complex Conditions
06
Dec 2015
Don’t Let Sickle Cell Disease Win
Having sickle cell disease does not mean that you can’t live a normal, fulfilling life.
By: Raymond Bullucks | 2
Food Allergies
Cow’s Milk Elimination Diet – What to Eat Instead
06
Nov 2015
Cow’s Milk Elimination Diet – What to Eat Instead
Learn how to replace the nutrients in cow's milk with non-milk foods for kids who have a milk-free diet.
By: Carina Venter, PhD, RD | 0
Food Allergies
05
Nov 2015
Cow’s Milk Elimination Diet – Where to Start
The information parents need to start a milk elimination diet for their child or family who have milk allergy or intolerance.
By: Carina Venter, PhD, RD | 4
Rare and Complex Conditions
Chiari Malformation: Before and After Decompression Surgery
28
Oct 2015
Chiari Malformation: Before and After Decompression Surgery
Brothers Jacob and Dylan were both diagnosed with Chiari Malformation as infants. Read about their journey before and after decompression surgery.
By: Leeann Fitzpatrick | 8
Rare and Complex Conditions
Living-Related Donor Transplant: How It Changed Me
22
Oct 2015
Living-Related Donor Transplant: How It Changed Me
Hillary Weidner was her daughter's living-related donor transplant match, a procedure needed to treat biliary atresia.
By: Hillary Weidner | 0
Heart Conditions
Adjusting to Life After A Heart Transplant
30
Sep 2015
Adjusting to Life After A Heart Transplant
Why so many follow up tests, clinic visits, and proximity limitations are necessary for preventing rejection and complications after heart transplant.
By: Shelly Stark, MSN, APRN, CNP | 1
Rare and Complex Conditions
10 Tips for Parents of Kids with Chiari Malformation
23
Sep 2015
10 Tips for Parents of Kids with Chiari Malformation
Matthew had decompression surgery for Chiari malformation at age 4. Here, his mom offers tips on how to manage this challenging condition.
By: Merideth Rought | 21
Rare and Complex Conditions
They’re at it Again: 700 Miles to Hope for HLH
15
Sep 2015
They’re at it Again: 700 Miles to Hope for HLH
Justin Akin and 20 other cyclists set off from Natchez, MS on Saturday riding 700 miles over 7 days to raise money and awareness for HLH.
By: Blog Editorial Team | 0
Rare and Complex Conditions
HLH: What Five Years and 700 Miles Means to Me
11
Sep 2015
HLH: What Five Years and 700 Miles Means to Me
Sam Chamberlin talks about riding in the 700 Miles to Hope bike ride in honor of his daughter Maya, who is a five-year survivor of HLH.
By: Sam Chamberlin | 4

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