A Manitoba family is trying to raise money to treat their 17-month-old daughter who is allergic to food.
That is how Cari Thiessen of Steinbach describes her girl Hallie who has Eosinophilic Gastrointestinal Disease: a rare disorder that inflames her intestines anytime she digests anything. Whatever little Hallie consumes must come through a tube that goes through her nose and into her stomach and, even then, it causes her constant pain. Hallie’s colon also has functional issues making her body almost permanently stopped up and bloated.
“It is like having an extremely colicky baby because she cries a lot but, at the same time, it’s harder because we know something is hurting her. Knowing there is nothing you can do to make it better is heartbreaking.”
Though her baby is no longer a newborn, Thiessen says Hallie requires continual monitoring.
“We are stuck in the newborn phase indefinitely,” she says, “I still only get three hours of sleep a night.”
Hallie was first diagnosed with the disorder on November 25th of last year. Thiessen says it took so long because, aside from her incessant whimpering, the baby exhibited the signs of growth and health common in most infants. Being able to name the disease hardly makes enduring it any easier.
“There literally isn’t anything that is unaffected,” states Thiessen. “Even the very simple things like preparing food for a meal are almost impossible because she cries all of the time and wants to be carried around. I can’t make a meal while I’m holding her because she sees the food and then loses her mind because she knows food.”
Hallie craves good smelling food like any normal human being, however, because she is unable to eat, being in the presence of any tasty morcels is, in many ways, torturous. Thiessen says this has caused no shortage of difficulties.
“Me and my husband Jon can’t eat meals together. Usually, I will eat dinner with our other daughter, Addy, in the basement and then, when I am done eating, Jon will go downstairs and eat.”
Needing to attend to four-year-old Addy only further complicates the situation. The Thiessens yearn to give both daughters the attention they deserve but the child with major health concerns does tend to take priority. For the parents, this also means a social life is out of the question.
Treatments for Hallie’s ailment cost between $1,200 and $2,500 per month and, with both mom and dad setting their primary focus on their child, a sufficient income is tough to come by.
A friend of the Thiessens, Stacey Friesen, has closely walked with them through the struggle, babysitting Addy when need be and providing support where she can. Recently, Friesen set up a Go Fund Me page for the family that seeks to raise $65,000. That money will go towards ongoing medical bills, and hopefully get them to the Cincinnati Children’s Hospital, which is the only facility in the world that directly treats the condition.
“The people who have gone there just rave about it,” comments Thiessen.
Costs at the American hospital will run significantly higher than $65,000, but the funds would do a lot to buoy the family as they continue searching for answers to their many questions.“To get her to a point where she could eat something and it would not hurt her, that would be the ultimate goal,” Thiessen states.
“You picture having this perfect baby and then you get her and she is perfect, but she is also sick and your whole life is flipped upside down and there is nothing you can do.” Nothing that is, except hope. And right now the Thiessens’ hope rests in a Cincinnati procedure that can just maybe give their daughter the ability to enjoy food.