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Girl has few safe eating options

Whenever classmates bring cupcakes into her Grade 2 classroom, Grace Christenson can only look longingly at the treat — she can’t partake.
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Grace Christenson gets a hug from her sister Claire as parents Ross and Amy with their son Tait look on. Grace has a rare metabolic disorder called Phenylketonuria making it necessary for her to eat a very low protein diet.

Whenever classmates bring cupcakes into her Grade 2 classroom, Grace Christenson can only look longingly at the treat — she can’t partake.

She also has to stand by as her friends eat other goodies, such as ice cream and pizza.

And the odd time when Grace’s family goes to a restaurant, she has to order the same old thing — plain salad and a few french fries.

“Grace would really like to go to a restaurant and be able to eat what everybody else eats,” said her mother, Amy Christenson.

But that’s not possible.

Grace suffers from PKU, a rare genetic condition that affects one in 12,000 children.

Since she doesn’t have an enzyme to digest an essential amino acid called phenylalanine, a regular diet would eventually leave her brain damaged.

Amy, who organized the first PKU fundraising walkathon in Red Deer on Saturday, admitted the condition is becoming harder to deal with as Grace grows older and becomes more aware of foods she’s missing out on.

“Absolutely she complains,” said Amy.

And the Red Deer mom understands that it’s hard to stay on a restrictive diet when Grace feels healthy, and when regular food wouldn’t necessarily leave her feeling sick in the short term.

But the phenylalanine would eventually build up in her body, harming her central nervous system and lowering her intelligence.

Unless an injectable medication is approved for those with PKU, as it was for diabetics, “she has to be on a very restricted diet for the rest of her life,” said Amy.

Grace gets a daily supplement to make up for the meat and dairy products she can’t eat.

“It contains all of the amino acids and vitamins and minerals that you would get in a regular diet,” said Amy, who also cooks meals for her daughter using certain vegetables and low-protein versions of pasta, flour, peanut butter and cheese sauce mix.

But everything has to be weighed to ensure no more than six grams of natural protein is consumed a day. And this includes fruit, which contains more protein than many people would assume.

Amy added, “I’m used to it by now, but it requires a lot of planning and organizing.”

Her daughter’s condition was diagnosed through a blood test given to all Alberta infants just after birth, while they are still in hospital. Amy knows of about 150 Albertans with the same condition.

Twenty-seven people turned out for the walkathon at Great Chief Park, which raised a higher than expected $2,700.

The money will help with the cost of education and advocacy. The PKU group, which has a $20,000 national fundraising goal, wants the Alberta government to increase coverage available for food and medication.

Amy said there’s also an expensive new medication that’s found to help about 30 per cent of PKU sufferers eat a broader diet that’s not covered by Alberta Health.

But the best hope yet is an injectable medication for the condition that’s now in stage three of clinical trials in the U.S. Amy hopes it will someday give people like Grace more safe eating options.

lmichelin@www.reddeeradvocate.com