One of the hardest things, Day says, is seeing how families of very ill children can be affected by the emotional and financial strain that such long-term problems put on them.

The Bucks divorced, lost a five-bedroom home in North Ogden, then a townhome in Ogden. Two cars were repossessed.

"We literally lost everything," Jenny Buck says while sitting in her apartment in South Ogden.

The Bucks have managed to find state and federal aid and insurance has helped, but only to a point. For example, insurance would not cover the medicine that helps Trevor keep food down.

Things do tend to stabilize, the ups and downs of a child who is seriously ill setting a new "norm" for the family, Malone says. Chronic illness creates peaks and plateaus, relatively stable periods interrupted by medical crisis. The family has to rally during those times.

"I think for the most part, families handle this pretty well," Malone says. "I'm always pretty amazed at the families and what they are able to withstand."

Ideally, a parent would set aside special time with the child who's healthy. In reality, Malone has found that even suggesting it just puts more pressure on parents who are already feeling so strained.

Planning ahead

At the Ogden Athletic Club, Trevor is headed to the other side of the pool, under the watchful eye of his parents.

Emily turns it into a race. She catches up to Trevor and passes him. She wins.

In another room at the club, Emily scampers up a climbing wall and jumps off. She plays air hockey with her dad.

For a moment, she takes time out to talk about Trevor. As far as she knows, Trevor is going to be fine.

"I just know," she says. Doctors have "fixed" her brother, according to Emily.

At the same time she considers her own future — she wants to be a veterinarian when she grows up. "Because I love animals," she says.

And her goal for the near future: a family trip to Disney World.

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E-mail: sspeckman@desnews.com; lois@desnews.com