3 -year-old Fischer was diagnosed with severe allergies at nine-months-old as his mother, Krysti, and family continue to make life as normal for him as possible with the help of local individuals and businesses.
“It was scary. I was like ‘how am I going to feed this child?’" - Krysti Bills
These days people like to joke about allergies or pretend they have them to get a more customized plate at a restaurant. Yet for many people alletrgies are no joke and are literally a matter of life and death. A need for constant vigilance in the face of Wyoming’s isolation and the high cost of life-saving drugs make living with deadly allergies a daily battle where the end goal can become keeping your child alive.
Krysti Bills, a 30-year-old Jackson native, moved to Glenrock two years ago with her partner James and two children, Fischer, 3, and 1-year-old Madilynn. For the most part the family has settled nicely into the community despite the many challenges facing the young family. Fischer has a profound allergy to eggs and peanuts as well as a severe intolerance to milk and wheat, making a trip to the grocery store an exhausting exercise for Krysti.
“We read labels three times. I read them in the store, I read them when I’m putting them away and then again before I prepare. So, even if I’ve read it, I’m rereading it. I read labels a lot,” she said. “We don’t go out often. Even though we can eat them, we don’t eat nuts, we don’t have peanut butter, we don’t have eggs. We don’t even have them in the house.”
At just six weeks old, Fischer’s strange rashes and odd reactions were thought to be allergy related. He was tested at nine months which is when the true extent of the little boy’s condition came to light.
“It was scary,” she recalled.“I was like ‘how am I going to feed this child?’ Wheat is in everything. And peanuts? That was so scary because you have the oils. That was my biggest fear because all I knew at the time was that peanut allergies are deadly.”
Overnight, the family had to permanently alter their lifestyle. Gone were the fresh eggs from the backyard chickens and most of the food items currently in their kitchen as Krysti tossed any food containing wheat, eggs, dairy or nuts. Gone were the nights out at restaurants and forget about ever leaving the kids with a sitter to enjoy a night out, and gone forever was any sense that food was a harmless part of everyday life.
As Krysti learned, Fischer didn’t even need to ingest the foods for his body to respond. Just having close contact to an egg sends his body into a violent reaction of raised welts and severe breathing issues.
Anaphylactic shock is the end result of untreated allergies and the ever present dark cloud that hangs over Fischer’s life.
“I found I had to be more vigilant on the eggs than I did everything else. One time, I had mayo and had it on my hands and I picked him up. I have pictures of the welts. It looks like somebody smacked him…just from mayo,” Kyrsti recalled. “We were told if this is his reaction just to contact don’t even try to let him eat an egg, unless he’s older and in a doctor’s office.”
One of the main issues with treating deadly allergies is the need to always have epipens close at hand and be able to use them properly. Fortunately, Krysti’s vigilance has made using the pen unnecessary so far but that does not mean she has any choice in purchasing the expensive medicine that expires after a year. The fight to have the medicine her son needed to be safe has been an exhausting and emotional journey.
“We had to save up enough money to purchase a set of epipens which at the time were still like $600. I remember just crying. My insurance wouldn’t cover my epipen because it’s an injectable. I remembering just bawling to the pharmacist,” she said. “We went to every single pharmacist in Casper. Finally Walmart got us a coupon and they forced it through and we were able to afford it. I remember just crying and thanking the lady at the pharmacy.”
A set of four epipens cost the family $1400.
Despite the many challenges Fischer faces every day (sister Madilynn seems, so far, allergy free), Krysti’s learned that a few accommodations can have a huge physical and emotional impact on the quality of their life.
It also helps when friends and neighbors take up the call of vigilance and do their part to help keep Fischer safe. Krysti was touched this year when some residents stepped up to help spread awareness through online posts while embracing the Teal Pumpkin Project, a growing local movement that offers non-food treats for children with allergies, so they can participate in holiday activities and other events.
“I was absolutely shocked and ecstatic this Halloween. It was so touching it almost made us cry,” she said.
The community has also been great about adjusting their own eating habits to accommodate Fischer, Krysti added. When she took over as leader for the Little Gnome Gardeners Club, a local gardening club for children, the monthly snack went egg and nut free. The children adjusted accordingly and didn’t complain about the food changes while parents took it as a challenge to find suitable alternatives. Little adjustments like these have made a huge impact for Fischer. Prior to swapping out snack foods, he wouldn’t have been able to participate in the club, something not many severely allergic children get to do.
The open response from many in the community has made a big difference in the quality of their lives as they now are free to participate.
“We felt so included. It was great,” she said, though outside of the gardener’s club other groups have not always been so accommodating.
“I have tried to get him in other little groups but the minute they say “snack,” I end up saying we can’t join you,” she said. “People have become hostile. All I want to do is keep him safe.”
A lot of people don’t get that, she noted, and as an “allergy mom” she has endured more than her fair share of insulting responses, negative rapprochements and uneducated replies over the years as many businesses and individuals casually dismiss the needs of the child with severe food allergies.
Thankfully, however, the general response from the community here in Glenrock has been positive.
“We have had people who have been very open minded and helpful,” she said, citing several examples: Ruth at the coffee shop, who takes the time to understand Fischer’s allergies and be as helpful as she can while Erin at Sweet Cheeks bakery has offered to make egg free cupcakes for different things. Employees at the Classic Café have also been good about checking ingredients in menu items, and overall, Krysti has been amazed by how open-hearted and how willing to help out many of the local businesses have been.
The next hurdle to deal with will be where Fischer goes to school. As a qualified elementary education teacher, she struggles with the mental debate on whether or not to send him to public school. Keeping him safe is always her main priority and although severe allergies are covered under the ADA, she is unsure at what point reasonable accommodations for Fischer might become an issue for other students.
Many schools in Wyoming make peanut-free lunches and snacks mandatory and offer other alternatives and designate certain tables in the lunch room for allergy kids.
But for Fischer—given his severe level of reaction and the fact that he also has dairy, egg and wheat allergies—this may not be enough. And as a teacher, she knows first-hand how easy it is to dismiss the severity of someone’s allergies if you don’t understand.
“As a teacher, before I had my son, I had students in my classroom with a variety of allergies, and I always had in the back of my mind that parents were just over protective or exaggerating,” she said, “but once Fischer was diagnosed our world completely changed.”
The family now carries safe food and Fischer’s epipens everywhere they go, and Fischer misses a lot of activities like birthdays or holidays, while Fischer struggles to understand why he’s being left out.”
It’s been eye opening for Krysti, who has discovered the extent to which food governs our social lives, and her goal is to give Fischer the skills to advocate for himself, so that he can also be included.
A little education and a few accommodations can go a long way in improving the quality of life for kids like Fischer, and she’s hopeful that spreading awareness will help more people understand.