The first time Caroline Masson ever fed her baby solid food, she watched in horror as he became violently sick.
Masson recalled the terrifying experience to Canada’s Global News:
“The first solid food we trialled was banana. He proceeded to vomit four hours later, six times in a row and pass out, pale and almost blue.
The first time I saw him go into shock from a reaction, I didn’t even know how to help him. I called 911 and they didn’t know what FPIES was. So, we just held our baby boy and cried with him throughout the night.”
Food-protein induced enterocolitis syndrome is a serious condition in children that results in chronic vomiting and diarrhea after consuming dairy or soy products. Children suffering from the syndrome are often diagnosed with “failure to thrive” because of an inability to gain weight or grow, according to the American College of Allergy, Asthma, and Immunology.
Masson’s son, Micah, was diagnosed with the syndrome when he was just 6 months old; however, his allergies are extremely severe and include more than 27 foods, according to Global News.
Although Micah is now 23 months old, well beyond the recommended age for babies to be introduced to solid foods.
According to GoFundMe, Micah’s allergies cause him to profusely vomit to the point of hypovolemic shock — a life-threatening condition from the loss of bodily fluids. The toddler also suffers from intense gastrointestinal pain with diarrhea, mucous, blood, reflux, and rash.
Micah has previously been hospitalized for his condition, including a one-week stay for malnutrition and failing to thrive. As a result, Micah is limited to one meal a day of fresh peaches, supplemented by a special formula. Micah is underweight and failing to thrive because of the extreme limitation in food and nutrition.GoFundMe
As Masson explained to Global News, not a day goes by that her son’s condition doesn’t affect him:
“I don’t think I have seen Micah have a day where something is not affecting him in some way or another. Since day one in the hospital, he had very bad food reactions — even through my milk.”
The blog Micah’s FPIES Life chronicles the introduction of new foods into Micah’s diet, which has largely been unsuccessful. For example, simple foods such as rice, barley, corn, carrots, and pears cause chronic symptoms of Micah’s condition to flare up. Meanwhile, chicken and maple syrup cause an acute reaction. Banana, hemp, and Tylenol cause the toddler to go into full-blown shock.
Although three foods have been identified as safe for Micah to consume — formula, peaches, and breast milk — problems for the Masson family have arisen regarding sourcing and funding their toddler’s precise nutritional needs.
As Masson explained on GoFundMe:
Living in Quebec, CAN, let’s just say peaches are very hard to find when off season, when you can’t eat frozen ones (unless they have no additives, which we still have not found yet) or dried ones either. Fresh is best. Organic would be even better as he needs to avoid contact with all pesticides and possible cross contamination due to his corn allergy. We are buying peaches in bulk and are running out of funds to do so, as we also have to pay for his complex medical needs.
Until October 2018, Canada’s Medicare program will cover the cost of Micah’s special formula, approximately $260 a week, then Masson will have to prove her son is still severely allergic to dairy.
Masson told Global News the prospect of proving her son’s allergy again is daunting:
“To challenge dairy would mean that we are hospitalized yet again for over 24 hours and watch my baby vomit non-stop and go limp in my arms because that is one of his biggest trigger foods.
Don’t get me wrong, if that is the only way to get him his formula, we know we have no choice, but who wants to watch their child suffer like that?”
Micah’s parents continue to experiment with new foods in hopes the toddler will be able to tolerate them, and thus boost his development and ability to thrive, sharing in the comments on the Global News article:
We are in the process of trialling rabbit broth. It seems to be going well, but after two weeks, he is only getting about 1/2 teaspoon worth a day. Not much.
In addition to the syndrome, Micah was also diagnosed with 22Q11.2 deletion (DiGeorge syndrome) with a 15Q13.3 microduplication, according to GoFundMe. He must visit nine doctors and specialists every month.
Although most children outgrow the syndrome by the age 3 or 4, Masson admitted to Global News the future is uncertain for Micah, given the fact that his allergy extends well beyond common trigger foods.
For now, the mother of three is focused on providing her son with what his little system can endure: formula and an abundance of peaches.
As Masson wrote on GoFundMe: “Life revolves around making sure he is the happiest little boy he can be. And for that we need to be able to provide him peaches every day.”
Watch a video about the boy’s story below: