Jellybean was diagnosed with Food Protein Enterocolitis (FPIES) when she was seven months old. Since then, eating has been a constant battle. FPIES caused her body to react to certain food proteins as hostile invaders and caused extreme vomiting episodes lasting as long as 5 hours. While many FPIES symptoms have resolved, she still has severe digestive issues and eating causes her constant pain.
Now a sparkling little six-year-old, Jellybean has been probed and cut on and medicated, and her issues have still not resolved. She has seen countless medical professionals, is well-acquainted with hospital emergency rooms, has seen a number of medical and naturopathic healers and has been on an extremely restrictive diet for more than two years, but food still hurts.
Jellybean is not like other six year olds in that she can’t have candy (nope, not even at Halloween, Christmas or Easter) she can’t have cookies or cakes or popsicles or popcorn or any of the other treats kids have. This is a pretty big deal because treats are everywhere—at school, friend’s houses, birthday parties, and etc. No watermelon, apples, pears, etc. She can’t have starches, potatoes, grains, sweeteners other than honey, and even many vegetables and fruits are excluded because they hurt!
The only thing that doesn’t really hurt is meat, but how much meat can a kid eat and enjoy? She takes therapeutic grade digestive enzymes, stomach acid, and a slew of other supplements. My little girl has to take 27 pills daily just to keep things moving. Just to survive.
She has had to embrace a life of discipline. Even if she were to be left alone in a room with candy, she wouldn’t eat it. She would want to though, more than anything, but she knows the pain it will bring so she refrains. The problem is, the pain comes anyway. Virtually everything she eats causes her pain. She wakes up in pain and goes to bed in pain. She vomits frequently for seemingly no reason at all. Sometimes she feels nauseous all day and spends a fair amount of time doubled over on the floor. Her belly swells up and becomes so distended that other little girls ask her why her belly is “fat.” She suffers from intestinal blockages and constipation requiring more trips to Primary Children’s for more invasive procedures.
She has had massive amounts of probiotics, fermented foods, and healing foods to resolve the gut flora imbalance to no avail. She has to miss school and events due to her pain. She has become well-practiced at working through the pain only to come undone in the evening. Then, we spend hours trying massage and hot baths to coax out a bowel movement. If that doesn’t work, she can no longer keep food down and she just vomits everything back up until she is able to release. Primary Children’s enema’s were the course of action for this but eventually, adults spreading your legs apart to shove something inside you that hurts became a serious violation and she has been traumatized.
But my little warrior is brave. She holds her breath and tries to take it. And she does. She is strong.
As a parent, the need to protect your child becomes more essential than your need to breathe or any other basic human instinct. But I can’t take away her pain. I've spent $6,000.00 in this past year alone seeking treatment but she hasn't healed. The bills keep stacking up which makes it difficult to seek new treatment. I need answers. Why does food cause her pain? Why is her body temperature dropping? Why does going to the bathroom hurt? Why does my baby hurt so much?
Any help you may be able to offer to contribute to her ongoing medical expenses would be a tremendous blessing for her. I have incurred much debt with more to come. Please consider helping to give her a chance to know a day without pain. And as always, healing thoughts and good vibrations sent our way are forever welcome. Thank you for your kind and loving consideration. Our gratitude is deep.
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