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The past two years have been hard for the Urbina family 鈥� parents Joe and Marlo and their 8-year-old twins, Max and Sofia.

It was two years ago that Sofia began experiencing the symptoms of Batten disease, a degenerative genetic condition robbing her of her senses. Two years ago, she could ride a bike. Today, she has limited vision and a spotty memory. The other day, she had trouble remembering Max’s name.

To cope, the Urbinas try to move forward.

鈥淲e just try to live these days fully,鈥� Marlo Urbina said. 鈥淲e just try to do stuff.鈥�

Bright spots these past two years include growing closer with the other families in their Sylvan-area neighborhood, near Portland Community College‘s Sylvania campus, where Joe and Marlo work. They’re there to take Max to a baseball game, or to pop in unannounced 鈥� to distract. Their little community on Southwest 60th Avenue is a major reason the family was reluctant to look for another place to live when it became clear their current 1940s home was ill-suited for Sofia’s accelerating condition.

Another bright spot is the family’s relationship with R&H Construction. The contractor found its way into the Urbinas’ lives through the Make-A-Wish Foundation, which last year paired R&H with the need to build for Sofia an 鈥渁rt yurt鈥� where she could reign and create all manner of crafts. Today, it’s a hit with Sofia and her friends.

With the family knowing it must remodel or relocate, it reached out to the only contractor it knew to ask for help finding a residential remodeler. They had plans in hand, contributed for free by a PCC design student. Marlo Urbina said she was really only looking for a contractor who 鈥渨ouldn’t rip us off, or leave us high and dry.鈥�

Jake Sly, R&H project manager, remembers when the call from Marlo came in.

鈥淭here was never a doubt that we were going to take this on,鈥� he said.

Sly helped oversee the art yurt construction. Now he’s looking after the 鈥淧rincess Project鈥� 鈥� a relatively minor addition to the builder’s portfolio in terms of dollar value and square footage, but huge in terms of significance to the Urbinas.

The addition will consist of a bedroom large enough for a hospital bed, and for Sofia’s wheelchair, when she needs one, to get around it. There’s an ADA-accessible bathroom and a big walk-in closet. There’s a side door for hospice workers, when they’re needed, to come and go.

And, of course, Sofia has taken the lead with design, which is decidedly, unapologetically girly, with an eye toward 鈥減rincess wallpaper, princess stickers, hearts,鈥� she said.

About 90 percent of the project cost was covered via donations by R&H and its subs, like Konell Construction and Demolition, which last week performed site prep work pro bono.

Max is already a fixture in the giant hole in the front yard.

鈥淗e loves Jake,鈥� his mother confided out of earshot.

It could be because the boy is drawn to the hole or all the heavy equipment. She suspects it’s because he talks to her son 鈥渓ike a person, not like a kid.鈥�

Sly has kids ages 8 and 10, and coaches dozens of young lacrosse players about Max’s age.

鈥淵ou wanna see how that works?鈥� Sly asked him after he started playing with a survey rod.

With construction taking place near windows in the living room, Marlo Urbina suspects her kids will be keeping close tabs on the project all summer.

鈥淚t’s better than TV,鈥� she said.