At 23 months old, Micah Gabriel Masson Lopez has no idea what a pain-free life is.
“I don’t think I have seen Micah have a day where something is not affecting him in some way or another,” mother Caroline Masson told Global News.
“Since day one in the hospital, he had very bad food reactions — even through my milk.”
When he was six months old, Micah was diagnosed with food-protein induced enterocolitis syndrome (FPIES), a food allergy that affects the gastrointestinal tract.
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“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,” Masson recalled.
He also lives with DiGeorge syndrome, an immunodeficiency, and has 15Q13.3 micro-duplication, a rare genetic condition where chromosome 15 has an extra piece.
His allergies are so severe, Micah has suffered from profuse vomiting that can lead to hypovolemic shock, intense gastrointestinal pain, diarrhea, mucus, blood, reflux and rashes.
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“The first time I saw him go into shock from a reaction, I didn’t even know how to help him,” Masson told Global News.
“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.”
Right now, Micah has only one safe food — peaches.
“Living in Quebec, let’s just say peaches are very hard to find off-season,” Masson said, noting that he eats only once a day.
Micah can’t eat frozen, canned or dried peaches, as they often contain additives; even non-organic peaches can be a gamble as pesticides or cross-contamination from corn (which he is allergic to) could pose a problem.
“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,” Masson said, adding that she has not gone back to work so she can care for Micah and his two older brothers.
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The toddler’s mother explained Micah visits nine different specialists every month.
“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,” she said.
“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.”
Micah is underweight and on the verge of another major failure to thrive (FTT) diagnosis; Masson explained this could lead to hospitalization and a feeding tube.
“It seems so unfair right now.”
The family has started a GoFundMe campaign to raise $1,500 to buy peaches and pay for his complex medical treatment.
“We see the holidays fast approaching and hit major high-stress levels. Everyone is on edge already,” she said.
“There is always that constant fear of not being able to feed your family and that really really heightens the stress level to maximum.”
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He is able to drink a special food formula, which Medicare is paying for until October 2018 — then, he’ll have to retake his dairy allergy test to qualify.
To pay for the formula themselves would cost about $260 a week.
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“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,” Masson told Global News.
“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?”
Masson points out that in most cases, children seem to outgrow their FPIES allergies by the time they are about four years old.
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However, this might not be the case for Micah because he has over 27 food allergies (most children have between two to three trigger foods) and other gut problems.
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