By Jennifer Mayerle

MINNEAPOLIS (WCCO) — A community is coming together to help a family facing a difficult journey ahead.

WCCO first reported on the Wahlstroms last year, when Lydia’s grandfather took her to prom at age 11. He wanted her to have the experience, and their story went viral.

Now 13, Lydia is a whiz on her Braille Sense. Younger brother Drew loves his Legos. Their parents cherish their time together.

“Both our kids have Batten disease, which is a rare neurological disease that is always fatal,” said mom Laura Wahlstrom.

It begins with losing your eyesight and having seizures, and it only progresses.

laura and lydia wahlstrom Nonprofit Renovates Home For Family Dealing With Rare Disease

Laura and Lydia Wahlstrom (credit: CBS)

“Right now our daughter has been using a walker. She won’t walk unassisted anymore, even in the home. She either crawls or needs a hand,” Laura said.

The couple noticed their needs changing a few years ago. The need for a house with more space with bigger doorways, hallways and an accessible bathroom grew — especially as Lydia could begin relying solely on a wheelchair.

“It could be one seizure away from something like that happening, where the next step would be a big step as far as the progression of the disease goes,” said dad Todd Wahlstrom.

The nonprofit Journey Home USA stepped in and purchased a house for the Wahlstroms. The home was already in need of remodeling.

“They said, ‘OK, well let’s develop a floor plan,'” Todd said. “Essentially, they said, ‘You tell us what needs to be in the home and we’ll make that work.'”

Todd and others with building experience began chipping away at the old.

drew and tood wahlstrom Nonprofit Renovates Home For Family Dealing With Rare Disease

Drew and Tood Wahlstrom (credit: CBS)

“People willingly and graciously just volunteered their time,” Todd said. “It’s amazing the amount of people that have said they want to help with this project.”

Their journey ahead is unclear.

“You’re already, you are just fighting for your kid, and then you take on something where you’re living feels just so much on top of it,” Laura said.

What is clear is that this gift will help the Wahlstroms care for their children.

“It’s just going to make it easier, it’s going to make it a lot easier for us, I think, to provide the care, feel more at ease in what we’re doing as things transition and progress,” Todd said.

“It’s a pretty big Christmas gift [laughs]!” Laura said.

The family hopes to move into the new home in April. The cost is reduced and much of the work is donated, but the Wahlstroms will eventually have to buy the house from Journey Home.

Any donations made to the nonprofit will reduce the final cost for the family.