While she now gets the special formula she needs to thrive, five-month-old Piper Seaton is not out of the woods yet.
“She has to be on this formula until she’s two,” said Piper’s mother, Deanna Laing-Crook. “But this will follow her her whole life.”
Piper was born with a severe allergy to all forms of cow protein, limiting what she can digest to a single expensive formula, which runs about $70 for a two-day supply. The NWT health care plan does not cover the cost of the formula, and the family has had to seek assistance from the federal government. Even that, however, is temporary.
“They’re covering it until the GNWT adds the allergy to the list of diseases it recognizes,” Laing-Crook said. “Our MLA (Jane Groenewegen) has been really pushing for it, but who knows how long it will take?”
But Laing-Crook and Piper’s father, Jodi Seaton, claim the lengthy and arduous process of having Piper’s condition recognized is already a step in the right direction. It took several weeks before Piper was diagnosed in Edmonton with the allergy, a process that took a toll on the parents as well as the child, whose health continued to deteriorate as she could not gain sustenance from anything she ingested.
“The tests were the worst,” said Laing-Crook. “The stress of not knowing and having words like ‘cancer’ and ‘cystic fibrosis’ thrown around was awful.”
Since coming home to Hay River from Edmonton, Laing-Crook and Seaton said they have been overwhelmed by the community’s response to their daughter’s plight.
“We are so appreciative of everything this community has done to help Piper. People have really come out and supported us,” said Laing-Crook.
For Jessye Kimble and her sister Cathy, organizers of a July 5 bake sale to raise money, it was important to note that the family had not asked for help.
“We surprised them with the bake sale,” said Jessye Kimble. “We wanted to do something to help with the formula, but now that it’s covered for now, everything raised will go to other expenses to do with medical travel.”
Although they know getting the allergy on the GNWT list of recognized diseases could be a long and difficult process, Laing-Crook and Seaton are determined.
“No parent should have to go through what we went through,” said Laing-Crook. “No one should have to watch their baby be that sick and not be able to get help dealing with it.”
— Sarah Ladik