Rare genetic disorder leads Holladay family to healthy eating habits

Published: Sunday, Dec. 2 2012 5:25 p.m. MST

"They often do not realize they are experiencing problems, and if they do not know, they cannot fix it," he said. "They end up having problems doing their jobs, with relationships, but they can still live relatively normal lives. It is just harder to do so."

The Oliver children are learning as they grow, and so far, they don't know any different.

Claire knows she can only eat "low-phe" foods, and the family tries to incorporate as much of the kids' diet into their daily lives, "recognizing it is always going to be different," Oliver said.

She's lost her own taste for meat, and the whole family eats a lot healthier, she said.

Most of the children's meals have to be homemade, aside from the occasional frozen vegetables that can be warmed in the microwave.

"There are no convenience foods for us," Oliver said.

She often uses Metamucil to give bread made with rice flour added bulk and fiber. The kids are allowed minimal spices and flavorings, but they enjoy a little bit of butter on otherwise bland mashed potatoes.

To make up for the lack of protein needed for optimal growth, Claire and Seth, and other patients of PKU, have to drink special formula, a synthetic milk product that has phenylalanine removed. The formula can cost a family up to $12,000 a year, but in Utah, it's mandated to be covered on most insurances, said Oliver, who started a local support group called the Intermountain PKU and Allied Disorders Association in 2008.

"As a mother, the most reassuring thing is to see other kids with PKU running around, being normal kids," she said. "It's also nice to be able to talk to other mothers about what we go through."

In addition to raising awareness and fundraising for research, the association initiates parents of newly diagnosed PKU patients with a starter kit containing a food scale, calculator, cookbook and various other resources, which Oliver said quickly become the tools of the trade, as they go everywhere with parents of children with PKU.

"You have to be really organized," she said. "We never do anything spur of the moment, and we carry supplies with us everywhere we go."

A typical day includes measured amounts of a variety of fruits and vegetables, crackers, low-protein cheese, popcorn and no meat, dairy, eggs, beans or nuts, which are forbidden on the special diet.

"You don't want any of your children to have a health condition of something they have to deal with for the rest of their lives, but the silver lining is that they have each other in this," Oliver said.

Claire and Seth are closely monitored by geneticists at the U., who follow their growth and development, but also their dietary needs, which can change over time.

Oliver admits the diagnosis was daunting at first, but "if it's your child's life on the line, you could do anything for them," she said.

"We're just like anybody else. We just eat differently. We eat to live. We view food as a necessity," Oliver said.

A growing understanding of food issues in the general public, including gluten intolerance and various allergies, have made the family feel more at home when they go out, and explaining their sometimes awkward habits of weighing and measuring foods gets easier as they go.

"They know they can't eat anything without clearing it with us first," Oliver said, as she sliced an apple Seth picked from the large fruit basket poised on the kitchen counter.

It's nice, she said, that they want to eat healthy foods, but it is also comforting for her, knowing that they have to in order to thrive.

E-mail: wleonard@desnews.com Twitter: wendyleonards

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