SAINT PAUL, Minn. — Sean Breininger is a fighter. He has Fanconi Anemia, a rare genetic disorder that leads to bone marrow failure and cancers at a rate of 700 times that of the general population.
"I've had tongue cancer twice, throat cancer twice, esophageal cancer. I lost my bladder to bladder cancer, and I've had over a hundred skin cancers, including melanoma," said Sean.
He and his wife, Allison Breininger, have been on this journey together for 13 years. Allison stepped in to be his caregiver.
"Every part of our life was changed," said Allison. "You're bearing witness to the suffering of your favorite person over and over and over again."
While Sean fights this rare disease, Allison fights to be understood.
"I noticed that when I did talk to caregivers about it, they tended to do what I call 'bright side' their own situation. So they would say, 'Well, I'm just blessed to be able to do this,' which is a component of it. But the other piece is, this is really hard," said Allison.
Allison started blogging about her caregiving experience in hopes that someone would understand.
"When I started writing, people said, 'You have my words. I didn't know we were allowed to say these things.'" she said.
That response showed Allison that many caregivers crave a safe space. That's when her blogging turned into a nonprofit. In 2021, she started The Negative Space.
"That comes from the artistic concept of it's everything that's in the background of a picture. And so it's the things that you don't really pay attention to, but if they were gone, the whole picture would change," said Allison.
The nonprofit has a podcast and a virtual support group that has participants all the way from Australia.
"It's been people saying, like, 'I wish I had found you ten years ago,'" said Allison.
Allison also does one-on-one coaching, and she's active in her community.
"I'm just really trying to also change the landscape here in the Twin Cities. [Many] of these organizations are so focused on the patient when really the caregiver is often the customer."
The Negative Space is a one-stop shop where caregivers can get the support they need from people who understand their needs.
Sean volunteers at the nonprofit, too.
"We have a deeper connection because of all of this," he said. "We try to make the most of every day."
The Negative Space also creates caregiver gift boxes. Allison carefully chooses what goes into the boxes. All of the items are things that the caregiver in your life would appreciate. You can order one of those from their website.
You can also stay connected with Allison and Sean on social media. You'll see snapshots of what caregiving looks like, plus get tips and tricks for supporters.
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