Family Battles Rare Batten Disease, Accepting Donations For Accessible Home

ST. PAUL, Minn. (WCCO) -- A family that has two kids with a rare terminal disorder is trying to remove barriers and make life easier at home. It's a big undertaking.

WCCO has followed the Wahlstorm's journey since 2016. That's when Lydia's grandfather took her to prom at age 11. He wanted her to have that experience. Now the family is looking for help after a major disappointment.

SEE ALSO: Girl With Terminal Illness Prepares For Prom With Grandpa

It's a typical day at the Wahlstrom's in North St. Paul. 11-year-old Drew gets off the bus from school and his 14-year-old sister Lydia is already home.

"Both my kids have a very rare and terminal illness called Batten Disease," their mother, Laura Wahlstrom, said.

It's similar to ALS, but these kids have seizures, lose their eyesight, and experience dementia and cognitive decline.

At the core of parenting is taking care of your kids. For the Wahlstrom's that starts with the home. And theirs just isn't accessible.

"I want to be able to remove the barrier of having it just be exhausting to try to care from them, whether it's getting from one room to the next," their father, Todd Wahlstrom, said.

As the kids' disease progressed, they tried finding a new home. In late 2017, volunteers chipped away at one as the non-profit Journey Home Minnesota stepped in to help. A year and a half later, the Wahlstrom's are still waiting.

The charity closed. The founder, Ramsey County Commissioner Blake Huffman, resigned from his county position. He's now under investigation there. And the Wahlstrom's have filed a complaint with the Attorney General's office.

"It's just been a really long journey, it's been exhausting in a lot of ways," Todd Wahlstrom said.

SEE ALSO: Nonprofit Renovates Home For Family Dealing With Rare Disease

"We just feel bad that it is now a project that has gone to the wayside and to feel like how to ask again is awkward and difficult, but for me also as the mom of kids who are dying-- that was 18 months of their lives and we just don't have that kind of time give," Laura Wahlstrom said.

They have a community rallying around them. Katie Nuss is moved by their strength.

"The kind of home they need to be accessible for their kids is far beyond most people's budgets. I just want to help them have a good life with their kids," Nuss said.

And so, they're asking for help to make the most of the time they have with their kids.

"In the middle of all that, there's grief. There's grief in all this, too. You know the happy times are great but they're still hard because you just know we're on a limited timeline here," Laura Wahlstrom said.

Friends of the family are trying to recover what was previously donated. But they are starting from scratch.

They are selling t-shirts and bracelets and are looking for donations and volunteers. A GoFundMe has been set up. Other donations can be sent to:

Wahlstrom Family House Benefit
Bell Bank
4886 Highway 61 North
Suite 200
White Bear Lake, MN 55110

Email landdshc@gmail.com if you can help in other ways.