Sunday, March 5, 2017

10 Winter Crafts for Hospital Stays

Hospital stays can happen all too often for many families living with FPIES and we know it can be difficult to keep your little one occupied. FPIES parent Zack Skrip gave us some really great ideas back in June on Things to do in the Hopsital. Expanding on one of his suggestions, I’ve put together a list of simple crafts that you and your child could do while stuck in the hospital this winter.

To make it as easy as possible, I have tried to limit the crafts I’m listing here to ones that can be done with only a handful of supplies. Some of the examples I’m listing do use other items, like glitter or googly eyes, but for the most part they can be done with only the following craft supplies:

  • Paper plates
  • Cotton balls
  • Construction paper
  • Glue
  • Scissors
  • Crayons, markers, or colored pencils


1. Cotton Ball Pictures
This is a fun tactile activity that you can do with some construction paper, glue, and cotton balls. Either draw or cut out a shape and let your child have fun gluing cotton balls to fill in any white spaces. There are tons of possibilities, but for winter time, check out these cotton ball snowmen and penguins

2. Foam Cup Snowmen
For this simple craft, just grab a disposable cup and turn it into a snowman with some construction paper decorations. If you didn’t bring your own cups, there’s a good chance you can find one in the hospital.

And if you can wrangle up six disposable cups and your child is feeling up to a little competition, consider a friendly game of Snowman Slam. Just arrange the decorated cups into a pyramid and take turns trying to knock them down using a rolled-up pair of socks.

3. Paper Heart Penguin
This adorable paper heart penguin requires only glue, scissors, and construction paper. The tutorial suggests using googly eyes, but if you don’t have those in your hospital craft kit, you could easily cut out paper eyes or just draw them on.

4. Paper Snowflakes
If your child is old enough to use scissors on their own, paper snowflakes are probably one of the easiest winter crafts you can do.

5. Paper Plate Crafts
With a paper plate, a pair of scissors, and something to color with, the possibilities are endless! Here are some cute winter themed choices: polar bear (uses cotton balls), penguin, snowflake, and snowman.

These paper plate superhero masks aren’t winter-themed, but as a mama with two little boys who are crazy about anything superhero-related, I couldn’t resist adding it in. There are lots of other paper plate mask ideas out there, as well, so you are sure to find one that your child would enjoy.

6. Paper Plate Winter Hat
Here’s one more paper plate idea. You might not be able to actually wear this paper plate hat, but it looks like a lot of fun to make! Just cut a paper plate in half, glue on some cotton balls and decorate it as you please.

7. Ripped Construction Paper Art
You can create some fun pictures with ripped paper and glue, including this cute snowy owl. Even if your child is too young to assemble the pieces into a more complicated shape, they will likely still enjoy just gluing it all together to create their own unique artwork.

8. Paper Plate Valentine Holder
With Valentine’s Day coming up, I thought it might be fun to include a few holiday themed ideas to round off this list. Here’s one for a cute paper plate Valentine holder. The tutorial uses staples to hold the paper plates together, but you use tape or glue as well. Once you’ve got a heart shaped holder, let your child decorate it with crayons, construction paper shapes, or whatever else you have handy!

9. Heart Wreaths
This paper plate heart wreath would be an easy and fun way to make the hospital seem a little more festive. It would also make a fun Valentine’s gift for someone special.

10. Valentine’s Day Card
Your child might also enjoy making some Valentine’s cards for friends, family members, or even the nurses and doctors there at the hospital. These ASL I-Love-You and I love you to pieces cards can both be done with nothing but construction paper, glue, and a pencil.



We hope you don’t have to spend too much time in the hospital this winter, but just in case you do, consider putting together a simple craft kit that you can grab on the way out the door. And if you and your little one do create any works of art in the hospital, we’d love to see them! Send us your pictures to: contact@thefpiesfoundation.org. 


This post was written by FPIES Foundation volunteer Aubrey Fredrickson.  Aubrey is a freelance writer and mother of two. Although not personally touched by FPIES, she is grateful for the opportunity to be involved with the families and volunteers of the FPIES Foundation.

Thursday, February 2, 2017

10 Things You Can Do to Spark the Conversation About Rare Diseases

The FPIES Foundation has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

For this 10th Rare Disease Day, we compiled a list of our top 10 things you can do to help spread awareness this Rare Diseases Day: 

#1. Share a Rare Disease Fact on social media. 




#2. Print and color a rare disease day coloring page and share it with facts about FPIES in your community or on social media. 

#3. Share a medical journal article on FPIES research from our Medical Literature page. 

#4. Change your profile and banner pictures on social media to show your support. 
#5. Challenge family and friends to join in raising awareness and share our “FPIES: Now you Know video”.

#6. Learn and share about the importance of patient registries and their role in  the advancement of understanding of rare disease with our "FPIES At a Crossroads" Global FPIES Day webinar. 

#7. Host an awareness event in your community. Not sure where to start?  
#8. Tell Your Story

#10.  Follow us on social media for our daily updates on staying involved!   

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org and www.globalgenes.org.  

This post was written by the FPIES Foundation Board.  


Monday, November 21, 2016

An Interview with the Awareness Critters Creator!

I was working on my master’s degree in health communication when I met my husband. Fast forward a year and a half later, I was sitting in the NICU with our newborn daughter feeling like I should have paid more attention to the practical aspects of the degree I had been working on. I thought when we left after that hellish week, that would be the worst health thing our daughter would ever go through.

I was wrong.

Fast forward again to when our daughter was 15-months-old, I sat in the parking lot of an allergist office crying with relief and joy. We finally had a name to what had been going on with my daughter – FPIES. I found The FPIES Foundation and through them various online support groups. I found a virtual village of other parents that were leading equally ridiculous lives and that “got it.

One of the ways I deal with stress is through art, painting, sewing, drawing, knitting, and so much more; really, I have tried my hand at anything artistic over the years, even glass blowing!

One night I was laying in bed—exhausted -- it had been a long day with a toddler and 4-month-old both reacting to something. As a mom of two children with FPIES and other various medical complexities, I am used to being exhausted, but somehow that day was especially draining.

By some miracle they had both fallen asleep relatively early. By all that was good and holy, I was going to take advantage of that and get some sleep! I lay down, but my brain wouldn’t stop working. I kept thinking about how my children had such different lives, how my family had such a different life, than almost all of my friends. I thought of all the medical debt we were not so slowly accruing, and how terrified and helpless it made me feel to be treading water emotionally and financially so much of the time, on top of the already helpless feeling that comes from seeing your child(ren) sick so much of the time. I sent out a desperate prayer (one that I had said many times before), of, “Please help me figure this out! Please help me figure out how to take care of my family!

All of a sudden, a fully formed idea flashed in my mind of a line of illustrations featuring animals or critters with different special and rare needs. Lists and images started zipping through my brain and instead of falling asleep I was rolling over and reaching for a pad of paper.

Several hours later, I had a paper filled with ideas for different animals that I had dubbed, Awareness Critters. I also had sketched out and then painted an illustration with a mother mouse and her child carrying teal pumpkins.  With Halloween coming up and Global FPIES Day right around the corner, with allergic reactions of my children fresh in my mind, I felt inspired.

I went to bed feeling happy. It had been a long time since I had been creative and suddenly I felt like I had found a calling – even if I was the only one who ever saw the paintings.

Hesitantly, I posted my painting to my own Facebook page and then to a couple of Facebook FPIES support groups. I shared the start of my idea and waited to see how people responded. I felt like I had just jumped naked in front of a giant crowd, and honestly wondered if my art was good enough, and if anyone would like the idea . Self doubt can be exhausting!. 

I was overwhelmed by the positive response and then by requests for illustrations to feature specific issues - diabetes, vision issues, Gtubes, NG tubes, leg braces, epilepsy, and so many more. Obviously, I had hit upon an idea and a need that wasn’t being met.


I believe that everyone, especially the youngest and most vulnerable in our society, should be seen, heard, and loved for who they are and not who the media or society says they “should be”. We are all deserving of love and compassion. We all have the same basic wants, needs and even dreams.

My hope for these Awareness Critters is that they bring awareness to families and individuals struggling with Rare and hard issues.

I have big dreams for these Critters, bigger than I even want to admit out loud yet. I dream of being able to do something that I love, that can support my family and bring about positive change in the world. I dream about being able to bring awareness to the amazing children and families that face the challenging situations that special and rare needs bring daily. I know the exhaustion, terror, isolation, and joy that come with raising these amazing children. I dream that Rare won’t mean “unheard of” anymore! 

This post was written by Brittany Huston.  Brittany is the mama of four beautiful children, the two youngest have multiple complex medical conditions, including FPIES. Her family lives on a small five acre farm in the high desert of New Mexico. Brittany's days often consist of running around after small children, working on craft projects, and chasing free-range turkeys out of the family's garden. She uses her family's daily life, the joys and the struggles, and the nature that surrounds her to help inspire her art and writing.