Making a meal that a preschooler will eat is challenging enough for most parents, but for one Sudbury mother, it’s close to impossible. Brittnee-Lynne Charlebois’ son, Zander, has a genetic disorder called phenylketonuria, or PKU, and has to eat what some have called “the most restrictive diet in the world.”

PKU leaves Zander unable to metabolize an amino acid called phenylalanine, so he has to eat a strict vegan diet containing almost no protein at all. Most fruits and vegetables are okay, but even bread and pasta are too protein-rich and have to be restricted.

Charlebois has to weigh every food her son eats, so she can calculate his protein intake to the exact fraction of a gram. Zander’s current protein target is 8.5 grams.

“If it’s too low, he stops growing,” she tells CTVNews.ca. “If it goes too high, he can have neurological problems and seizures,” as well as intellectual disabilities from the buildup of phenylalanine in his body.

PKU patients are typically diagnosed at birth, through the newborn heel prick test. Most patients are able to avoid disability by drinking a special nutritional supplement every day to get essential protein.

They must also follow the low-protein PKU diet, but John Adams, the president of the non-profit Canadian PKU and Allied Disorders (CanPKU), says it has to be scrupulously followed t oavoid the brain risks.

“Most people don’t realize how difficult the diet is,” he says. “I challenge you to show me a more restrictive diet.”

As Ontarians, Zander and his mother are among the lucky ones. The formula that Zander needs to drink every day is covered by the province under the Inherited Metabolic Diseases program. So are several PKU diet foods, including special breads, pastas and burger mix powders.

But PKU patients in Newfoundland and Labrador aren’t as lucky. There, the province doesn’t even cover the nutritional supplement for adults, which costs hundreds of dollars a month, never mind the specialty foods.

“You can get some coverage, but you have to do a (financial) means test to be sure you qualify and then you have to redo the test every three months,” says Adams.

Until recently, adult PKU patients in P.E.I. also received no financial help, but the province recently brought in the PKU Supplement Program that not only covers the cost of the nutritional supplement, it gives patients $3,600 annually to spend on any specialty foods they like, including mixes and pre-made products. A similar program in British Columbia offers approximately $3,000 per year per patient for PKU foods.

Charlebois says she would love to be able to offer Zander ready-to-eat PKU foods. Instead, he has to choose from a small selection of food mixes that the IMD program makes available. But she says he’s a typical picky kid and doesn't like any of them, finding most to be too spicy.

“He throws it on the ground and says, ‘Yucky,’” she says.

She used to buy a powdered mix for a PKU hot dog that he liked, but that item has been out of stock for months on the specialty food website she uses. The same goes for the powdered eggs and the mashed potatoes.

“I have no idea why these things are unavailable. All I know is it just really sucks for people who have this disease,” she says.

Charlebois says what’s most frustrating is that her son doesn’t understand why he can’t eat what other people around him eat.

“He sees what I’m eating and wants to eat that too. Any kid wants what’s on their parent’s plate,” she says.

Turning to crowdfunding

Charlebois would love to pay out-of-pocket for a package of premade PKU hot dogs but the single mom can’t afford the $33 price tag. Nor can she afford the pizza pockets at $15 a pack, or the non-dairy ice cream at $35 a pack.

So she’s taken to crowdfunding to raise money to buy her son a few items he would actually enjoy eating.

CanPKU’s Adams says the fact that a mother has to reach out to strangers to pay for food for her son “speaks to the larger issue that the Ontario government has fallen behind in covering these products.”

He says he doesn’t understand why other provinces allow patients to choose which foods they want as long they’re within their yearly allowance.

“I don’t know what the bias is in the decision-making process that prepared foods are not covered,” he says.

But a spokesperson for Ontario’s Ministry of Health says the province’s IMD program is “by far the most generous program of its kind in Canada.” David Jensen says Ontario spends an average of $10,000-$12,000 per patient per year for IMD-listed products.

“This is significantly greater value than allowance-based programs in other jurisdictions,” he said in an email to CTV News.

He added that the ministry will also consider adding new products to the list of IMD-covered products “if they are submitted for review by registered dieticians who treat metabolic disorders.”

But Adams says that a number of good, nutritious PKU premade foods have entered the market in the last few years. Patients should be free to choose these items and the provinces shouldn’t be restricting their access to them, he said.

“Include the new products on the list of what they cover, or give them an allowance. But just stop all the regulation,” he said.