An Edmonton mother says she is locked in a frustrating fight, trying to get the Alberta government to pay for the prescription food her son needs to survive.

"This is not a choice. This is something that he does need, or else the results will be catastrophic," said Lisa Caskenette, whose four-month-old son Issac suffers from an Necrotizing Enterocolitis, an intestinal disease.

si-issac-family

Caskenette says she has tried talking with the health minister about what she calls a loophole in coverage, but she wasn't able to get a meeting. (CBC)

The disease, which struck Issac a few weeks after he was born, makes it impossible for Issac to digest dairy products. It also puts a strain on Issac’s body when digesting food, and could lead to internal bleeding.

The condition has sent the infant to the hospital several times.

"I thought, oh, we have a milk allergy, we won’t be able to do milk and cheese … and then we learned it was so much more than that," Caskenette said.

"There’s a million and one things he’ll never be able to eat."

She says her son may become less sensitive as he grows into a toddler. Until then, the family has started feeding him Neocate, a special kind of formula. Without it, Caskenette says he would need a colostomy bag and likely need to remain in hospital.

The formula costs the family around $1,200 a month — a cost Casekenette says will only increase as Issac grows.

Yet despite doctors saying the formula is necessary, Blue Cross won’t cover the costs.

"There is an answer. It is just not within our grasp."

Province won't cover cost of formula

So far, the family has been paying out of pocket for the formula, with the help of private donations.

Caskenette has appealed the Blue Cross decision, which begins this week.

In the meantime, she has been meeting with provincial officials in an attempt to get the province to fund the formula for her son and other children with the disorder. She says so far, she said she has been ignored.

"We’re still getting a song-and-dance about covering it in Alberta," she said.

"There’s nothing I wouldn’t do with him. But going back and forth trying to plead the case with government officials who are not listening and not understands …. it’s incredibly frustrating. It is not a place where anyone should be."

When she tried to get a hold of Health Minister Fred Horne’s office, she said she was denied a meeting and was told that the province wouldn’t cover the formula.

"I’m not asking for them to hand it over. I’m asking for coverage. I’m asking to pay a portion, and then have the rest covered by Alberta healthcare."

She says if the family’s appeal doesn’t go their way, they will look to friends and family to pay for the formula, and may even resort to leaving the province.

However, she says, it shouldn’t have to come to that.

"This is an Alberta citizen that is in need of the provincial healthcare system," she said.