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Can you imagine seven year olds celebrating birthdays with cakes made out of crushed ice; having their primary food source be a very specialized formula; and sporting very spiffy belly rings – called G-Tubes? If you looked at them, out playing soccer or riding their bikes, you might never know there was anything wrong with these kids. But if you looked closer, you’d realize that even though their weight is fine and they are quite active, their endurance is much lower than most children. If you spent a week with them when they have a simple cold, you’d see how quickly their blood sugar drops into the dangerous realm. And if you spent four months with them, you’d get to join them on their quarterly trek several hours to the wonderful specialist who helps them manage the diseases they have. These are very dear children in my family and they have a couple of different diseases, one of which is in the family of Eosinophilic Esophagitis or EE.
This is National Eosinophilic Awareness Week so it seemed like a good time to share with you about this disease known by few, although slowly but surely that is changing! According to the American Partnership for Eosinophilic Disorders (APFED) , “EE is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults. This increase is thought to reflect an increase in diagnosis as well as a true increase in EE cases.”
There are a variety of symptoms, a variety of treatments and a variety of kids who have been diagnosed with it including the sweet ones in my family. Because so few people have heard of it, it can be difficult finding accurate and useful information. APFED is a wonderful resource for finding out more about it as is the CURED Foundation . They have information, links, and some terrific videos that will make you smile big, but also want to grab a tissue. The money raised by these two great organizations goes directly to dedicated specialists to help them research more treatments, and hopefully someday to find a cure!
We are quite excited to announce that APFED has named Demi Lovato and Ned Specktor as their ambassadors of the year. If you, like me, have grandkids in the age range of 5 – 25, you’ll probably know one of the reasons we’re so excited. My grandkids LOVE Disney’s Demi Lovato as well as the Jonas Brothers, with whom Ned Specktor works. 🙂 What a great impact they can play, not just in raising public awareness for this disease but in encouraging all the patients who are also their fans! Here’s the video of a dinner honoring them as well as the brave young woman who started the process: The sweet ones in our family rank high in my sights as little heroes. Don’t get me wrong, they are not perfect. They get scared, frustrated, and upset. They sometimes cheat by sneaking food. Then again, those are the exceptions not the rule for them. Overall, while they don’t always understand what’s going on, they do know that when they eat most foods, it hurts them, a lot. The vast majority of the time, each one of them exercises more self-control than adults three times their age. They have gone to parties, BBQs, and fun restaurants, and found other things to enjoy, instead of complaining over what they can’t have.
I am so proud of them, and of their parents, for being the pioneers they are in this difficult situation, and so often doing it with such panache! Whether it’s making sure to go to a restaurant they’re not crazy about because it has a fun play area for the kids, or making yummy ice cookies for them by freezing Martinelli’s Sparkling Apple Cider (one of the few foods they can tolerate) in their soft, teddy-bear shaped muffin cups, or finding creative ways to celebrate Halloween without candy, they work very hard to make fun and special memories the kids and they can enjoy for decades to come. These kids are learning the wonderful trait of self-discipline along with making lemonade out of lemons, and that is priceless, just as they are. So if you see a child unable to eat what the rest of the class is eating, whether it’s due to Celiac Disease, peanut allergy, or EE, don’t feel sorry for them. Admire them, and their parents, and look for ways to come along side them to understand them and support them. And if you get a chance, I would encourage you to support APFED as well. 🙂
Wow- It seems like I saw some instances of this diorder on an Extreme Makeover family… I agree these kids teach us lessons everyday! From your post, their diet is limited- is there a way for others to maybe help the famililes with their food prep?? I’ll take a look at the website about it- Thank you for sharing:) God Bless You- Heidi
Hi Heidi, Thanks so much for visiting. It is difficult but God is good! And the family is great on focusing on a lot of other fun priorities so that helps a lot 🙂